welcome to the wide world of lupus

The Lupus Notebook

2011-11-24T19:48:00.000-08:00

Hi (predominately) girls : )

Well, as most of you'd be aware, The Wide World of Lupus has been a little quiet since The Lupus Magazine was established as a voice and creative scene for the lupus community worldwide. However, we're still keeping the blog going as we still get feedback from previous posts.

The big new announcement is we've just published The Lupus Notebook ~ a personal journal, diary and lupus management tool all in one! All proceeds will benefit lupus research too.

For more info, click the links or preview the book. There is an expanded edition on the way as well ~ Geoff

The Lupus Notebook by geoff thomas

The Lupus Magazine

2011-06-01T22:51:00.000-07:00

With The Lupus Magazine now in its second year and with over 20,000 readers from over 140 countries, it has grown and continues to do so.

So many of the articles and topics would have previously been published on this blog if it wasn't for the magazine.

So without duplicating everything, I've decided to focus primarily on the magazine. However I'll keep this blog out there so you can see how everything evolved over time.

And there are topics here that may not have been addressed in the magazine thus far.

So take a moment to look at the magazine and you do have the opportunity to comment on our previous articles via our archive: http://thelupusmagazine.blogspot.com/

Thanks so much for being part of The Wide World of Lupus - we're not disappearing, just getting bigger and better...

Geoff ~
www.thelupusmagazine.com
www.dirtydogpublishing.com

The Lupus Magazine - 2011

2011-02-01T18:48:00.000-08:00

Hi Guys & Girls!

Well, The Lupus Magazine is bigger and better in 2011! In January we featured our biggest Spanish language edition and also Elisa Lynee's wonderful lupus story and the details behind her benefit song 'Fly free butterfly, fly free.'

Our February edition features a wonderful interview by our youngest writer, Maddie Pearce. Golfer Salimah Mussani talked to Maddie about her lupus and following her dreams on and off the golf course.

You can see the latest edition of The Lupus Magazine by following the links - Enjoy!

Lupus and 2011

2010-12-25T00:00:00.001-08:00

I'm taking this opportunity to wish everyone Happy Holidays and a great and healthy 2011.

I'm also apologizing for not being too active on this blog since The Lupus Magazine has been my passion for the past 10 months and its archive blog also takes up a great deal of time. But I do remember that a cycling adventure, followed by this blog is where it all began.

Just like this universal blog, The Lupus Magazine now has readers from around the world - 109 countries as of this week.

So it just goes to show how serious this disease is world-wide.

As Always - Please feel free to contact me via The Lupus Magazine - Geoff Thomas ~

snoop dogg & lupus

2010-10-04T02:26:00.000-07:00

Shante Broadus: in this month's lupus magazine

Proving That Fighting Lupus Ain't Nothing But A G-Thang Baby!

The Lupus Magazine's Tiffany-Marie talks to Shante Broadus, the wife of Snoop Dogg, about lupus awareness and her daughter's battle with lupus.

This month in The Lupus Magazine

world lupus month

2010-09-25T19:08:00.000-07:00

Just a quick reminder that October is World Lupus Awareness Month. There has been a little confusion in the past, as the national awareness month for lupus in The United States is May.

Worldwide however and in various other countries, October is still recognised as an awareness month. There has been some debate as to whether we should bundle everything into May, but at this stage we just try to make the most of all the awareness we can generate and receive.

lupus walks - new features

2010-08-31T20:31:00.001-07:00

Well, it's been a busy month as we now have our 6th Lupus Magazine online. Every month we seem to be adding a new feature and this month we have a new page for all our videos and also your event photos.

This month (September) we're featuring the Australian Lupus group, Lupus Association Queensland, after their 5 kilometre walk for lupus last Sunday.

A fun time had by all!

You can send your event photographs and have them published in The Lupus Magazine.

lupus australia

2010-08-14T22:49:00.000-07:00

press release samples

2010-08-14T04:41:00.000-07:00

The Lupus Magazine is now offering free press releases for lupus organizations who wish to announce lupus news and events - see The Lupus Magazine for details.

win love simple - a film with a lupus theme

2010-08-07T00:42:00.000-07:00

THE LUPUS MAGAZINE AND FILM “LOVE SIMPLE” ANNOUNCE CONTEST

Publication and Movie Looking for the Most Imaginative “Lupus Lies”

NEW YORK, NY – July 31, 2010 – The Lupus Magazine and the cast and crew of the film “Love Simple” are searching for the most creative “Lupus Lies” during the month of August in a contest that will award the five best “lies” a free copy of the film and an opportunity to share their “lie” and its repercussions on the magazine’s website.

In the film “Love Simple,” the lead character Seta, who battles lupus, lies about her disease and why she is reluctant to further her relationship with potential boyfriend Adam. Seta’s "Lupus Lie" was: “I'm seeing somebody else!"

Visitors to and readers of The Lupus Magazine can submit, in 20 words or less, their biggest “Lupus Lie.” The top five most creative responses will be chosen by the magazine, cast and crew, and posted on The Lupus Magazine site along with their personal stories about their lies, and will receive each receive a free copy of the film.

“Given the response we’ve received from several lupus survivors about how the film mirrors their own personal experiences, we thought it might be an interesting idea to seek out some of other “Lupus Lies,” says Mark von Sternberg, director, “Love Simple.” “We are happy to be working with The Lupus Magazine on a joint search for some of the best “Lupus Lies.”

Log onto www.thelupusmagazine.com for details about the contest, and be sure to click on the accompanying video clip from the film that features Seta revealing her own “Lupus Lie.”

# # #

free press release - lupus orgs & groups

2010-07-27T23:27:00.000-07:00

Firstly, apologies for being missing in transit lately...

The Lupus Magazine has actually been a bigger job than first anticipated.

I absolutely love editing it and I love the girls who are writing for us too - so inspirational! But I must admit, the time factor is something I underestimated!

Anyway, one addition to the magazine that you may like to know about is the free press releases we can send on you behalf if you have a lupus event or fundraiser planned. Check out the upcoming August edition for more details.

Also, please keep the questions and suggestions coming - even via this blog of mine! We may take a while to cover your suggested topic,but we always keep them in mind once we hear what you'd like to read.

Thank you so much for your support over the past few years - Geoff ~

love simple in the lupus magazine

2010-07-15T03:11:00.000-07:00

Just an update regarding the topic of Love Simple posted last month.

In August, The Lupus Magazine will feature an article about the film with a few interesting interviews.

There will be more information regarding a DVD release too - we're just getting the latest details from the producer/s.

Sorry to tease those that haven't seen it yet - but it is a great little film : )

Geoff ~

P.S... We're always looking for new writers and articles for The Lupus Magazine.

Just email our magazine address: lupusnews@live.com.au for more details or see the FAQ page on the website.

morgan woolard lupus - Miss USA runner-up and Miss Oklahoma

2010-07-10T01:34:00.000-07:00

In a world exclusive, Miss USA runner-up Morgan Woolard talks to The Lupus Magazine about the politics of pageantry and the pain of lupus.

"I am well aware that SLE lupus is incurable... hopefully this interview will set the record straight”

In the recent Miss USA pageant, Miss Oklahoma, Morgan Woolard, made a statement about her experience with lupus. In a particular clip, Woolard effectively mentioned she’d been cured of lupus and it was miraculous.

Put simply, lupus is a complicated, terrible disease where the immune system attacks its own tissues. There are different types of lupus. SLE Lupus is the most common and the most devastating. Along with cutaneous lupus, it is well known there is no cure for these two forms of the condition. Then there is drug induced lupus, where the symptoms generally disappear after quitting the offending medicine.

Within moments of Woolard making her statement, people from all over the world were starting to demand answers. Surely she had drug induced lupus, and if so, why didn’t she clarify that fact?

In the July Issue of The Lupus Magazine, Woolard clarifies her statement.

'I am well aware that SLE lupus is incurable. I guess what's so complicated for me is the fact that they never figured out or diagnosed which lupus it was I suffered from. I just want this whole issue to be cleared up. It’s really been burdening my heart.”

Woolard continues to discuss her battle with lupus and also gives an insight into the world of pageantry.

For the full story:

http://www.thelupusmagazine.com/index.html

lfa guest blogger - geoff thomas - lupus australia

2010-06-30T01:53:00.000-07:00

Guest Blogger Geoff Thomas Talks about Men and Lupus

On The Road to a Lupus Cure - The LFA Blog

*Geoff is living with discoid lupus in Australia. He has cycled around America to raise lupus awareness and is the Gold Coast officer of The Lupus Association Queensland. His worldwide blog has had hits from over 130 different countries and his original cycling website has generated over 200,000 visits. Geoff has recently established an online lupus news site – The Lupus Magazine*

To read my blog post for The Lupus Foundation of America, you can find it here.

It was a pleasure to write it as I continue to support the great work of The LFA - Geoff~

lupus australia - interview

2010-06-26T02:26:00.000-07:00

Gail Falconer was an athlete, competing as a sports cyclist at a national level.

In her early twenties all sorts of things started to go wrong with her body: exposure to sunlight made her break out in a painful rash, and she started getting severe arthritic pains and headaches.

Eventually she was diagnosed with lupus, about which so little is really known, with no cure on the horizon. Gail started up an association to offer support for other sufferers, and raise money to help improve awareness of the disease http://www.lupusqld.org.au/

Listen to Gail's national interview on ABC radio (Australia) here

a lupus trilogy documentary series

2010-06-19T03:09:00.000-07:00

A Decade of Living & Dying

By Marcia Urbin Raymond

The story behind a trilogy documentary series on lupus and chronic illness, as seen through the eyes of the same families documented over a ten-year span.

I've recently just viewed this excellent lupus dvd trilogy by Marcia Urbin Raymond and I must say what an excellent production it is. It's informative, moving and a 'must see' for those with lupus or those who wish to know more.

For more information or to purchase the Lupus DVD Trilogy,

www.livingthroughdying.net

or to contact Marcia,

info@livingthroughdying.net

A trailer can be seen on The Lupus Magzine's own You Tube Channel

lupus film - love simple

2010-06-04T23:23:00.000-07:00

A new film with a lupus theme:

The producers of the romantic comedy Love Simple are donating 30 percent of the proceeds from the film's sale on the iTunes Store (http://www.itunes.com/) beginning June 14 through June 21 to the S.L.E. Lupus Foundation. This donation will help raise money and awareness for the support, treatment and prevention of lupus.

The S.L.E. Lupus Foundation, headquartered in New York City, and its West Coast division Lupus LA, lead the country in direct patient services, education, public awareness and funding for novel lupus research on the national level.

"Adam and Seta fall madly in love after meeting in a Brooklyn laundromat. She suffers from Lupus, he's stuck at home caring for his chronically ill father. Both lie through their teeth to avoid having to reveal they are anything but perfect. Eventually, their deceit unravels and they are faced with a choice: walk away or try to save the relationship. Deciding to give it one last chance, Adam and Seta reveal everything about who they really are despite the fact that they may not love one another once they know the truth."

Take a look at a the film's website and the official trailer. Variety reviewed the film here.

lupus australia

2010-06-01T23:55:00.000-07:00

Lupus Australia - just a quick message for all those in Australia with lupus. Despite where you live, the Lupus Association QLD has a great online support community on Facebook.

Visitors to the Facebook page live as far away as France. It's a friendly place and the Association does have meet-ups in Queensland regularly for all ages and including family and friends.

aps awareness month is coming soon

2010-05-26T03:31:00.000-07:00

As lupus has made the most of an awareness month in The United States for another year, we mustn't forget our friends at the APS Foundation of America and their awareness month in June.

APS is an abbreviation for Antiphospholipid Antibody Syndrome. APS is also called APLS or APLA in the United States and Hughes Syndrome or Sticky Blood in the UK.

The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. They are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Their URL is http://www.apsfa.org/

happy world lupus day

2010-05-09T02:03:00.000-07:00

Wishing everyone a happy and healthy World Lupus Day!

It's our one day of the year to collectively reflect and also promote lupus awareness.

This year is the most active I've experienced when it comes to lupus groups and organizations raising awareness.

Best wishes and well done to you all!

Geoff~

wherever you float - update

2010-05-05T18:00:00.000-07:00

Some good news as there will be a download of Wherever You Float available in a week or so. We will list details here and also on the lupus magazine facebook page.

Wherever You Float (Lorie & Rhett) also have their own facebook page now too!

wherever you float - the lupus song you must hear

2010-05-02T00:21:00.000-07:00

This great song, "Wherever you float", was written and recorded by Lorie and Rhett Streeter. It's a fantasic lupus song and you can read the story behind it in The Lupus Magazine May edition.

care for lupus indonesia

2010-04-21T02:21:00.000-07:00

With May being a month with many lupus fundraisers and walks, I'm just letting our friends in Indonesia know about an event in Bandung on the 8th of May - a walk for lupus.

For more information, you can contact:

Syamsi Dhuha Foundation
Jl. Sekeloa Selatan II/2B
Komp. UNPAD Bandung 40132
Tlp: 022-250 33 87 / 022 - 253 3050
Hp : 0813 2050 9446, 0816709391
email : end@cbn.net.id,
www.syamsidhuhafoundation.org

lupus cyclist video - bike usa for lupus awareness

2010-04-09T00:39:00.000-07:00

Lupus Cyclist - Lupus Awareness - The Lupus Magazine from Lupus Magazine on Vimeo.

I've kept this television interview in the bottom drawer for a while and it was suggested at a lupus lunch this week that I should post it on the blog. So here goes...

seal and lupus - erin meets seal

2010-04-01T19:50:00.000-07:00

*Photograph Copyright Erin-Louise Povey

One of the greatest lupus stories I've heard over the past year is Australian Erin-Louise Povey meeting Seal at his recent Sydney concert.

It wasn't a difficult decision to lead with her story in the first edition of The Lupus Magazine.

You can read Erin's account of the evening here.

the lupus magazine

2010-03-31T00:11:00.001-07:00

Yes... The Lupus Magazine is finally online.

After a month of fine-tuning and after a many months of considering the idea, the first edition of The Lupus Magazine is online. Published monthly with important news updates added as they happen, The Lupus Magazine is a new website devoted to lupus news and interesting articles from around the world.

The idea first came to me after hearing of many young lupus patients who've had to defer their studies due to lupus. I saw it as an avenue for lupus patients to be creative and finally have their written efforts published - believe me, it took a long time before some of my articles and photographs were published in print and online.

Another major theme of the site is to publish lupus events and awareness activities. So if you have some interesting lupus news, events coming up, or you would like to add your lupus organization to the site, just let me know!

So click on the link (The Lupus Magazine), take a look around and tell me what you think. It's early days and I know it can be improved over time - but hey... we had to start somewhere.

Geoff~

lupus conference barcelona - conferencia de lupus barcelona

2010-03-29T00:09:00.000-07:00

To our friends in Spain, there's an inmportant lupus conference being held this Tuesday in Barcelona - 30/03/2010

Conference of Lupus: Treatment del Siglo XXI. - the next session on systemic lupus erythematous - The: Treatment of XXI century.

Dr. Ricard Cervera (Head of Service, Services Disease Autoinmunes) Moderator: Dr.. Gerard Espinosa (Senior Specialist, Service Autoinmunes Disease) will be guests.

Place: Classroom Farreras-Valentine (function rooms) the Hospital (the stairs between 9 and 11 on the third floor) Day: Tuesday, March 30 at 18:00 hours. Clinical Hospital, C / Villarroel 170, Barcelona 08036. Many thanks to the Catalan Association of Lupus.

30/03/2010
Conferencia
CONFERENCIA DE LUPUS: TRATAMIENTO DEL SIGLO XXI
ACLEG y el Servicio de Enfermedades autoinmunes del H. Clínico de Barcelona
Os informan que se impartirá la siguiente sesión sobre Lupus eritematoso sistemico. LES: Tratamiento del siglo XXI. Conferenciante: Dr. Ricard Cervera (Jefe de Servicio, Servico de Enfermedades Autoinmunes) Moderador: Dr. Gerard Espinosa (Especialista Senior, Servicio de Enfermedades Autoinmunes) Lugar: Aula Farreras-Valentí (sala de actos) del Hospital Clínic (entre las escaleras 9 y 11, en el tercer piso) Día: martes, 30 de marzo a las 18:00 horas. Hospital Clínico, C/ Villarroel 170, Barcelona 08036. Os esperamos!!!!

Lugar: Associació Catalana de Lupus E.G. - C/ Torrent Roig 52, 1º 2ª (Toda persona interesada en contactar con ACLEG,debe concertar día y hora de visita.) - Cabrils, Barcelona
Si necesitas más información o tienes cualquier consulta a realizar en relación a este acto, no dudes en utilizar el formulario Contactar y te responderemos tan pronto como sea posible.

lfa advocacy day - participate from home

2010-03-15T19:32:00.000-07:00

Participate in the LFA’s Advocacy Day on Tuesday, March 16 – from the Comfort of Your Home

As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16. Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.

Here’s what you can do from home.

Send an email, call, or write your Congressman or Senator.
Raise awareness by sending an ecard
Spread the word on Facebook and Twitter, or through your blog.
Everything you need to know about doing one – or more – of those 3 options above is now available on the LFA’s Advocacy Day landing page.

Remember, we really need you to make your voices heard on Tuesday the 16th.

lets do lunch - lupus queensland

2010-03-11T02:12:00.000-08:00

It's a big world, but if you can make it to Surfers Paradise in Australia for lunch, April 7, it would be great to meet you.

The Lupus Association Queensland is a fantastic organisation and I'll be joining my new friends from the LAQ for a lunch overlooking the beach on Australia's Gold Coast.

Date: Wednesday, April 7, 2010
Time: 12:00pm - 3:00pm
Location: Northcliffe Surf Club
Street: Cnr Garfield Terrace & Thornton Street
City/Town: Surfers Paradise, Australia

For more info regarding The Lupus Association Queensland, here are the details:

Lupus Association Queensland
C/O 1 Cartwright Street (Cnr Lutwyche Road)
Windsor Brisbane QLD 4040
Tel: 07 3857 4200
Email: info@lupusqld.org.au
Website: www.lupusqld.org.au
Facebook: click here

care for lupus indonesia

2010-03-05T19:42:00.000-08:00

Care for Lupus Indonesia:

Please be informed, that Syamsi Dhuha Foundation (SDF) is moving to :

Jl. Ir. H. Juanda 369
Komp. DDK No. 1
Bandung 40135 - Indonesia

Phone/ Fax: +62 22 250 2008, 250 4050
Mobile: +62 813 2050 9446
Email: end@cbn.net.id

website: www.syamsidhuhafoundation.org
Facebook: Syamsi Dhuha Foundation (SDF)

Dian Syarief - Chair person of SDF

Care for Lupus - Your Caring Saves Lives

sorry girls & guys!

2010-02-24T03:11:00.000-08:00

Sorry I've been missing!

Apart from a little discoid flare, moving house, not having an internet connection and driving many miles, I just had to take a break for a few weeks. I'm sure those affected with any form of lupus would understand.

The good news is, I'm working on a new site, and over the past few weeks, I've met so many new lupus friends.

Please keep forwarding your lupus news... I should have a little more time soon!

Geoff~

lupus spain - televison de cataluña TV3 españa

2010-01-18T23:37:00.000-08:00

Thanks to Pilar Lucas and the Asociacion Catalana Lupus in Spain for the following good news.

Last month, TV3 Catalonia Spain, featured two interviews regarding lupus. One is of a patient explaining her illness and the second features a live interview of a physician at the Hospital Clinico in Barcelona. I haven't been able to add the videos here, but I can direct you to the links. Lupus Patient Video
Dr. Espinosa

And well done to TV3 who raised about 5 million euros for rare disease research.

"El pasado mes en la televison de cataluña TV3 españa se recaudo dinero unos 5 millones y pico de euros para investigacion en las enfermedades minoritarias. El lupus no es minoritario, pero si desconocido pudimos participar con estos dos videos estan en CATALAN es el testimonio de una paciente y una entrevista en directo a un medico del Hospital Clinico de Barcelona.Espero que te guste vamos haciendo poco divulgacion del LUPUS. Pilar Lucas. Presidenta."

geoff and the wide world of lupus - facebook

2010-01-16T19:39:00.000-08:00

After a little 'prodding' and suggestions I was slightly behind the times, I've finally managed to open a facebook account. Up until now, I just haven't had the time to devote more time behind a laptop. Please be patient as it might take me a little time to get the hang of it! - G ~

lupus advocacy day 2010

2010-01-09T21:13:00.001-08:00

Take Action!

Lupus is a significant public health issue in The United States that requires national action and attention now.

The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill.

Save the date... this year's event will take place March 15-16, 2010.

For more information, click here!

a happy & healthy 2010

2010-01-01T02:34:00.000-08:00

As another year ticks over, it's time to wish everyone a happy & healthy 2010. I hope that this year provides us with more answers, rather than questions, when it comes to lupus.

I know so many people are trying to make a difference, including research, support and awareness. Without these continuing efforts, we would be so far behind when there is hope out there!

Best wishes to you all and I hope the New Year delivers happiness and better health for all - Geoff.

happy holidays to the lupus world!

2009-12-19T18:32:00.000-08:00

I'm taking this opportunity to wish everyone a happy and safe holiday season.

Many thanks for all your kind emails and I wish everyone a safe and healthy time with family and friends. Unfortunately, Christmas or this time of year, can feel quite lonely for many battling with health problems and other issues. And I also realise that as lupus affects so many worldwide, not everyone actually 'celebrates' Christmas or other world festivities.

I suppose this is just a reminder that many people are thinking of others with lupus at this time of year - you're not alone! Connecting with others with lupus at anytime of year can be a great way to share with others who understand what you're going through.

The act of giving is also associated with Christmas. I tend to reflect on all the great acts of kindness I've learnt about over the past year and those wonderful people who have given their time and energy to raise funds and awareness for lupus whether it was in the smallest town or biggest city - Regards to you all!

lucy lennon cook lupus song

2009-12-15T23:34:00.000-08:00

Hi Guys!

Just an update on my previous post regarding the lupus research fundraiser by Julian Lennon and James Scott Cook.

Their song, Lucy, is now available to download via iTunes and a few other methods. As mentioned all proceeds will benefit lupus research via The Lupus Foundation of America and The St. Thomas Lupus Trust in the UK.

To read more about Lucy or to download the song, check out all the details here!

roxanne black - unexpected blessings

2009-12-05T23:50:00.000-08:00

Recently I discovered a remarkable story...

At the age of 15, Roxanne Black was diagnosed with lupus.

Through the desire as a teenager to connect with others who knew what she was going through, she formed a support group for those with similar illnesses, which later became The Friends Heath Connection.

It's an internationally and nationally recognised organization that connects thousands with similar positions. Roxanne has made it her mission for the past twenty years to turn a negative into a positive by helping others.

Unexpected Blessings is not only Roxanne's personal story. It offers support and encouragement to anyone touched by an illness. For anyone with lupus, or related to someone special with an unfortunate illness, I'm sure you'll find Roxanne's book an inspirational read. Many thanks to Jess and Roxanne's publisher, Avery/Penguin, for bringing this book to my attention. It's always great to read positive lupus stories throughout the world.

julian lennon - lupus

2009-11-26T00:27:00.000-08:00

Some fantastic news as Julian Lennon & James Scott Cook have announced that they will donate a portion of the proceeds of their song 'Lucy' to fund lupus research.

The song was created to honor James' grandmother who has been living with lupus and Lucy Vodden, a childhood friend of Julian's who I've posted about here previously. Unfortunately, Lucy Vodden lost her battle with lupus recently. She was also the inspiration for the Beatles song, Lucy in the Sky with Diamonds.

Proceeds will assist The Lupus Foundation of America and the St. Thomas Lupus Trust in the U.K. - You can find more info by clicking on this link on the Lupus Foundation of America Website or you can read this article published in USA Today.

geoff thomas lupus - australia - geoff thomas leukaemia - england

2009-11-23T22:52:00.000-08:00

This post is just a clarification as some people have been confused recently. There are two Geoff Thomas' out there who have cycled for a cause.

There's the fantastic Geoff Thomas who played football for England and Crystal Palace... Then there's me (who tackled more asphalt than opponents on the football field).

The English Geoff was diagnosed with leukaemia and has since raised millions to fund blood cancer treatment. More about Geoff and his foundation can be found here.

The Geoff (pictured above at the Australian Embassy in D.C.) is the one compiling this blog.

I hope this clarifies the difference, as I wouldn't want anyone to confuse my ride for lupus with the phenomenal work Geoff has done for his foundation. One day, it would be great to meet him, especially after arriving in London many years ago and knowing I needed a football team to follow. With a namesake as captain, and living in the area, it had to be Crystal Palace.

(Any chance of putting the boots back on Geoff? - I think Palace might need you!)

happy birthday to the alliance for lupus research!

2009-11-18T22:15:00.000-08:00

More significant than this blog reaching the one year milestone, has to be the 10th birthday of The Alliance for Lupus Research.

I had the fortune to represent the ALR while cycling around America and their support was absolutely fantastic.

Knowing I was also spreading the word about the ALR made many lonely miles so worthwhile. But ultimately, it's the ALR and their approach to fundraising and research that makes them so worthwhile - 100% of all donations go to support research.

If you're unfamiliar with the ALR and all the great things they do, here's a message from the founder of the ALR, Robert Wood Johnson IV.

Or you can check out their website here!

the wide world of lupus - our 1st birthday!

2009-11-03T00:43:00.000-08:00

Nobody said cycling across Australia or 9018 miles around America for lupus awareness was going to be an easy ride. And as I write this, I realize we have a long road ahead as we search for a cure for lupus.

But having said that, I've met so many people from all corners of the globe who are so committed to lupus awareness and research - words cannot justify the compassion and commitment so many people offer the lupus community worldwide.

As I hit the finish line in New York after 150 - something days on the road, I knew my lupus journey had really just commenced. I also knew that lupus was/is a worldwide concern and many countries didn't/don't really have a voice.

This blog is a combination of raising awareness and letting that international voice be heard. And today, The Wide World of Lupus celebrates its 1st birthday.

A year ago, I would never have thought that 12 months later, 10,813 people would have visited a lupus site by some Aussie guy on the other side of the world. A year ago I would never have imagined that people from 124 different countries would also visit this blog.

Personally, I think that number (124) is hugely important. It just shows how lupus affects so many of our brothers and sisters worldwide!

There are so many people to thank for helping make this blog a useful resource for those interested in the 'wider' lupus community. There are so many organizations and lupus groups who I'd be more than happy to promote here in the future.

I've often said that if there's an upside to lupus, it's the fantastic and beautiful people one gets to meet. That comment remains relevant today.

In the coming months, I might make a few slight changes and update The Wide World of Lupus. But the blog will basically remain the same as it seems to serve a purpose - to highlight the fact that lupus doesn't only affect those in major countries, but all of us, despite our race, color or religion.

Likewise, I will continue to highlight your lupus efforts and stories from around the world despite where you live - I'm only an email away!

In closing, my sincere thanks again and best wishes to you all!

(Now if only I could get that book of mine finished!)

Kind Regards as Always,
Geoff Thomas.

special announcement soon!

2009-10-28T02:31:00.000-07:00

Hi Girls & Guys!

Just keep an eye on this blog for some heartfelt words early next week. Tuesday November 3 will mark a special occasion for me, and it's all due to you - the unexpected thousands who have visited this blog since its inception.

Geoff xx

lfa chapters

2009-10-21T22:57:00.000-07:00

Many people find this blog after being recently diagnosed with lupus.

I know the feeling of trawling the Internet for all the info you can find on the subject. A great place to start is by checking out the website of The Lupus Foundation of America.

Importantly, The LFA has support chapters throughout The United States. If you live in America and require more information regarding a lupus chapter in your area click here.

Alternatively, various national organizations can also be found on The LFA Website.

twitter - lupus world

2009-10-10T04:32:00.000-07:00

As you'd probably be aware, it's taken me some time to 'get with the times' and promote the world-wide lupus awareness message via social networking sites. My excuse has been finding the time to do so with everything else going on.

But I've finally managed to set up a Twitter account!

You never know - I might eventually progress to Face Space - actually that's not a bad name for a social networking site... hmmm???

Anyway, now I've taken the plunge, you're welcome to follow The Wide World of Lupus on Twitter.

As always,
Geoff.

lupus canada - great news

2009-10-03T01:26:00.000-07:00

Hi Guys & Girls and happy World Lupus Month.

After living in Canada and with relatives there, it was disappointing I wasn't able to cross the border on my bike trip in 07 due to the weather conditions.

Thankfully, ever since I've been in touch with Kathy from The Lupus Foundation of Ontario and she's passed on some great news regarding lupus awareness in Canada.

The following is an email from Pat Leece of Lupus Canada:

"I am very pleased to announce that Lupus Canada has received commitment from three outstanding Canadian actors who have agreed to support us in our efforts to promote public awareness and our Walk a Block event.

Debra McGrath, Colin Mochrie and Patrick McKenna, all recognizable Canadian actors/comedians, have accepted our request to work with us to move the mission and vision of Lupus Canada forward to Canadians through awareness and the promotion of Walk a Block.

Debra and Colin are married and Patrick is one of their closest friends. They come to us with passion for our under-recognized disease as well as some personal experience with the disease and have offered their support at no charge to Lupus Canada.

Debra currently stars on CBC’s Little Mosque on the Prairie and was a founding member of the comedy troupe Women Fully Clothed; Colin is most recognized for his work on Whose Line is it Anyway? and is currently touring with comedic partner Brad Sherwood in the Evening with Colin & Brad tour.

Patrick is best known for playing Harold Green on the television series The Red Green Show and Marty Stephens on Traders .

All are alumni of The Second City and have been involved in multiple facets of the entertainment industry both in Canada and the US.

Leanne and I had the opportunity to meet with Debra and Colin this week to formalize our discussions and found them to be humble, gracious and generous in their commitment to our cause and their desire to make a difference in the lives of people living with lupus! They too are now part of our team…working together to conquer lupus!"

This is a remarkable effort for all involved and many thanks to you all.

thoughts for our lupus friends

2009-10-01T00:49:00.000-07:00

On the eve of World Lupus Month, we offer our thoughts and wishes to our lupus friends who have been affected by recent weather events and earthquakes throughout the world.

The Philippines, Samoa, American Samoa and Indonesia have been particularly affected.

Our thoughts are with you all.

walk for lupus now - lfa lupus walks

2009-09-19T16:51:00.000-07:00

Many of you would know of the great work the Lupus Foundation of America does for the research of lupus, education programs and the support for those with lupus and their families.

In the coming weeks, various locations throughout America are conducting their fundraising walks for lupus. It's a great opportunity to join others with this common condition and raise well-needed funds at the same time.

Here are the September 2009 walks through the last half of the month. They are listed alphabetically by state.

Birmingham, Alabama -- September 26, 2009
Sacramento, California -- September 26, 2009
Naperville, Illinois -- September 26, 2009
Central Indiana, Indiana -- September 26, 2009
Des Moines, Iowa -- September 26, 2009
Cleveland, Ohio -- September 26, 2009
Franklin, Ohio -- September 26, 2009
Lima, Ohio -- September 26, 2009
Spokane, Washington -- September 26, 2009

For more details and future walks in your area, contact the Lupus Foundation of America.

world lupus month - reminder

2009-09-05T18:55:00.000-07:00

Hi Guys & Girls!

Just a reminder that World Lupus Month is less than thirty days away.

It's often overlooked that October is World Lupus Month - so if your organization has anything special planned for World Lupus Month anywhere in the world, I'd be happy to post the details here on the worldwide blog.

more drug news - the alr

2009-08-31T00:54:00.001-07:00

There's some more promising news from The Alliance for Lupus Research regarding drug trials.

Two biopharmaceutical companies, UCB and Immunomedics, announced promising results of their phase IIb study for epratuzumab, their drug in development for treating systemic lupus erythematosus (SLE, or lupus). This is hopeful news for all those affected by this autoimmune disease.

WHAT THIS MEANS FOR PEOPLE WITH LUPUS:

UCB will better understand how to design a potential phase III trial studying many more patients. The results of the phase IIb study will help give UCB researchers confidence in determining best dosage and frequency when the larger scale clinical trial is designed. Very basically, this trial gives UCB researchers useful data for moving epratuzumab further down the clinical pipeline, giving people with lupus another glimmer of hope for a potential new therapy for the disease.

This promising news about epratuzumab was made possible in part through supporters of the Alliance for Lupus Research (ALR). The ALR has strongly supported B-cell inhibition and depletion research, going back to some of our very first grants funded, now nearly ten years ago. Since inception, the ALR has funded almost $5-million in the area of B-cell research.

Many thanks to the ALR for this info. No doubt, you can read more about this and the great work the ALR are doing by checking out their website.

lupus contestant - hell's kitchen

2009-08-21T22:35:00.000-07:00

For those of us on the other side of the world, there's a yet another cooking program on television, but in America, Hell's Kitchen is a little different for us with a form of lupus.

One of the contestants is Amanda Davenport. Amanda is a 27-year-old Sous Chef based in New York who has lupus.

Each week Amanda has been contributing to the LFA's great blog, 'On the Road to a Cure' and you can read her posts and see some great recipes by clicking here.

Amanda's official bio from the show is also available here.

I'm sure many people are really supporting Amanda and her efforts. For those of us who can't see the program, thankfully we can keep up with Amanda's progress online.

lupus & the new york times

2009-08-08T18:17:00.000-07:00

The New York Times website is featuring the stories of lupus patients from across America as part of their Patient Voices series.

With the use of audio interviews and photos, Patient Voices seeks to give a glimpse into the life of someone living with lupus. The stories featured are as diverse as the disease itself, and include actress/model Tomiko Fraser Hines, who lost her sister to lupus, and Jeremy Margolis, who recently suffered a heart attack resulting from lupus complications.

This is a really interesting production from such a large news organization.

To see these videos, please visit The New York Times Website.

Many thanks to the LFA for bringing this to our attention.

important news - lupus drug progress

2009-07-25T16:38:00.000-07:00

Human Genome Sciences and their partner GlaxoSmithKline announced this week that its drug BENLYSTA™ (belimumab) met its primary endpoint in BLISS-52, the first of two pivotal Phase 3 trials in patients with serologically active systemic lupus erythematosus (SLE).

Now... if you're like me and find anything too scientific difficult to absorb, I've added a few links here explaining the importance of this news.

Firstly, there's the video above where William W. Freimuth, M.D., Ph.D. Vice President, Human Genome Sciences explains a little more about the research and drug trial.

Also LFA President & CEO Sandra C. Raymond comments on the first potential lupus treatment in 50 Years via another video message.

Then there's this article written in The Washington Post.

The Alliance For Lupus Research also has some information regarding this important news which is available by clicking here.

julie's story - a book by julie miller

2009-07-18T22:24:00.000-07:00

Over the past year, I've been fortunate to communicate with Julie Miller.

Julie has recently had a book published: My Life With Lupus

'My Life With Lupus', sums up the challenges and struggles of a young woman's life in dealing with the very unpredictable disease, Lupus. Julie was a young and energetic twenty-four-year-old woman with her whole life ahead of her.

Although life was headed in the right direction for Julie, her health had other plans. Julie began noticing vague symptoms which became bothersome to her studies.

For a year, Julie dealt with ongoing fatigue and pain which was attributed to the stress of planning a wedding and working toward a master's degree.

Eventually, the symptoms worsened and Julie needed to seek medical attention. What would the doctors tell her? How would she react?

Ten years later, Julie is talking about how she coped through the challenges and got through the difficult days in dealing with lupus.

"Life is a rollercoaster", Julie says. "It has its ups and downs, but you just have to take one day at a time. I feel God has blessed me with Lupus, so that I can reach out to others. My life could be a whole lot worse, and I've seen a whole lot worse".

Julie's Story, 'My Life With Lupus' has been written for all of those who suffer from an autoimmune disease. You can purchase a copy of My Life With Lupus here or you can search or it on barnesandnoble.com.

Julie was also recently interviewed on Fox 17 News.

Well done Julie!

a new lupus book

2009-07-12T03:52:00.000-07:00

I have an idea...

Can you describe your lupus journey in 140 words or less?

Would you like to raise awareness for lupus?

Would you like to be creative?

Would you like to have your words published in a book?

Would you also like to be credited in print and also have a link advertising your lupus organization?

I'm prepared to pay to publish a book of your short lupus stories to raise awareness.

All you have to do is email me in 140 words or less, your creative lupus story.

It doesn't have to be all doom and gloom. It can inspire others and even be humorous. And you don't even have to be a member of a lupus organization - just write for yourself and others. Just make the most of those 140 words.

Write anything you like... as long as it's lupus related.

I'd love to hear from all ages & nationalities. Even from those who have a relative or friend with lupus.

Those 140 words or less can be your choice: as long as others would love to read them.

My idea is to give you a writing credit at the end of your article and even display a link to your lupus organization to raise awareness.

You're welcome to email me with those 140 words now, or indeed email me for further information: Geoff

Regards as Always,
Geoff (Jeff)
bikeusa07@hotmail.com

michael jackson & lupus - an interesting interview

2009-07-11T00:33:00.000-07:00

Michael Jackson & Lupus - The Interview

I'd like to share with you an interview that was aired recently on the American television channel, ABC.

Dr. Robert Lahita, a professor of medicine who has has written numerous books on lupus and other autoimmune conditions, gives a great description of lupus and how it related to Michael Jackson.

For those of you who don't understand lupus, this also gives an insight as to how it affects so many people worldwide.

Many thanks to Kendra of cure4lupus for bringing this to my attention.

Regards, Geoff.

did michael jackson die from lupus?

2009-07-04T22:50:00.000-07:00

Did Michael Jackson die from lupus?

Well probably not, but it has been confirmed he had discoid or cutaneous lupus and a number of other health issues. And with Jackson's link with lupus, there has been so much mentioned and even misunderstood over the past week or so.

You mightn't agree with everything Michelle says in the following video links regarding lupus and Jackson, but you have to agree she gives us an invaluable insight about what it's like to live with lupus.

Michelle is a former investigative reporter and her life has been drastically altered due to lupus. However, she's passionate about raising awareness and contributing to society.

It's been fascinating to correspond with Michelle lately and I'd urge you to watch these videos:
Did Michael Jackson Die From Lupus - Part One.
Did Michael Jackson Die From Lupus - Part Two.

Being a reporter and also passionate about news in general, Michelle also has a news/opinion blog.

Thanks Michelle, and no doubt we'll be hearing more from you in the future.

Regards, Geoff.

michael jackson lupus

2009-06-26T02:45:00.000-07:00

Michael Jackson dies & lupus...

It's often been noted that Michael Jackson suffered from lupus. So on the day that he died, a quick search online unearthed many lupus references.

Many links featured people on message boards and forums who wondered if lupus had anything to do with his death. And many comments were from people who didn't understand lupus - Yes, I've even seen a werewolf reference to his so-called eccentricity.

With the huge media attention Jackson's passing has generated, I suppose it's only natural for everyone to 'jump to conclusions' and latch on to various reports they hear. Many online media organisations seem to 'copy and paste' the same stories these days in an immediacy to get a story out there.

I suppose my question is:

When did Jackson ever disclose publicly that he had lupus?

I've always read that it's been 'reported' he had the disease, but I can't ever recall hearing him discuss the topic. Where is it, on the record, as we say?

Regards, Geoff.

lúpus Brasil

2009-06-22T04:36:00.000-07:00

Welcome to Lupus Brazil!

For many people around the world, Brazil means football (soccer), Rio de Janeiro and the Amazon. But we have to remember that lupus affects everyone around the world and Brazil is no exception.

So it's fantastic to see a great website from our friends in Brazil: Lupus Online This website can also be translated, like many others, by Google or other programs.

It's amazing what other countries are doing to raise awareness and offer support. It's also very interesting to see how other countries promote lupus through some great websites and how they deal with this condition.

I'd love to hear from people in Brazil and learn more about lupus in South America.

Best Wishes and Regards,

Geoff (Jeff).

Bem-vindo ao Lúpus Brasil!

É fantástico ver um grande lúpus site de nossos amigos no Brasil: lupusonline.com.br

É fantástico para saber o que os outros estão fazendo ao redor do mundo a oferecer apoio e promover a sensibilização para lúpus. Seria ótimo ouvir de pessoas no Brasil.

Cumprimentos e obrigado - Geoff (Jeff) Thomas

lupus arizona

2009-06-17T23:53:00.001-07:00

I have to admit, Arizona was one of the toughest states I encountered while cycling around America. However, it was also one of the most unique and rewarding.

Unfortunately, due to the summer heat (116 in Gila Bend!), I couldn't divert to Phoenix and catch up with the Arizona chapter of the LFA - so close, yet so far!

Fortunately I did manage to 'touch base' via email after an interview was published in the Arizona Daily Star when I took a break in Tuscon (those newspaper offices had great air-conditioning). Thankfully, we've remained in touch and I do hope to return to meet everyone in person sooner rather than later. Lupus Arizona is a great organization.

The LFA, Arizona Chapter is the local arm of the nation's leading non-profit, voluntary health organization dedicated to improving the diagnosis and treatment of lupus, supporting and providing hope to individuals, their families and friends affected by the disease, increasing awareness of lupus among health professionals and the public, and finding the cure. The LFA Arizona Chapter, are the leaders of the lupus movement statewide. Lupus Arizona can also offer support and information for those located in Nevada.

And it's a pleasure to announce the 4th annual Lupus Arizona Walk for Lupus which will be held Sunday, November 8th 2009.

Registration Starts at 8:00 a.m. and there will be a 5k Competitive Run and 5k Family Fun Walk commencing at Kiwanis Park in Tempe, 6111 All American Way (South Soccer Field on the North Side of Guadalupe).

Register, and Create or Join a Team at www.firstgiving.com/lupusarizona

For more info visit www.lupusarizona.org

Help make it a great day for Lupus Awareness!

Regards as always,
Geoff

lucy in the sky with diamonds has lupus - sle

2009-06-13T21:51:00.000-07:00

It has been reported that the inspiration for the Beatles song, Lucy in the Sky with Diamonds, is battling lupus/SLE.

Lucy Vodden and John Lennon's eldest son, Julian, have been reunited after he heard that she is battling Lupus.

Lucy was immortalised after the young Julian showed his father a picture of her with star-like shapes and told him it was 'Lucy in the sky with diamonds'. Lennon then used the phrase as a title for the famous song that was released by the Beatles in 1967 and later 'covered' by Elton John.

To read more about Lucy and her battle with lupus click here or search for 'Lucy Vodden Lupus' in your search engine.

As Always... Geoff.

floods, moving house & the gold coast

2009-06-12T23:07:00.000-07:00

Hi guys & girls!

Sorry I've been missing for a few weeks... After evacuating due to floods here in eastern Australia, I've moved house and am now living on the Gold Coast (which is very much like Florida).

And after waiting two weeks and dealing with frustrating telephone companies, I've finally got an internet connection again - a long story!

In the next week or so, I'll start posting regular lupus articles here again from around the world. Now it's just a matter of answering those two weeks of emails!

It's good to be back... Geoff.

paris has lupus org

2009-05-18T01:57:00.000-07:00

Paris, Hilton & Lupus... Paris has Lupus Org.

Who would have thought that Paris, the name Hilton, and lupus could all be associated?

Members of the Hilton family have been involved with lupus issues in the past, as can be seen here in a fundraising event for Lupus LA.

And many lupus events have occurred at a hotel with the Hilton name - but I'm still not sure what the so-called American celebrity, Paris Hilton, actually does.

What I do know, is that lupus affects people from all around the world and our friends in France have support too.

Paris, and France, have a lupus organization:

Association Lupus France (this page can be translated)
7 rue de Rocroy 75010 Paris
Tél : 01 45 26 33 27 et 06 07 35 48 69

It would be great to hear more of how our friends around the world are dealing with lupus. My best wishes to those in Paris and France and congratulations on your efforts.

Vous remercier, vous et ce qui concerne - Geoff

Qui aurait pensé que Paris, le nom de Hilton, et le lupus peuvent tous être associés?

Les membres de la famille Hilton ont été impliqués dans le lupus dans le passé, comme on peut le voir ici dans un événement de collecte de fonds pour Lupus LA. Lupus et de nombreux événements ont eu lieu à l'hôtel Hilton avec le nom - mais je ne suis toujours pas sûr de ce que les soi-disant célébrité Paris Hilton fait.

Ce que je sais, c'est que le lupus touche des personnes de partout dans le monde et nos amis en France, ont trop de soutien. Paris et la France, ont un lupus organisation:

Association Lupus France - 7 rue de Rocroy 75010 Paris
Tél: 01 45 26 33 27 et 06 07 35 48 69

Il serait génial d'entendre plus de la manière dont nos amis du monde entier font face avec le lupus. Mes meilleurs voeux à ceux de Paris et la France, et félicitations pour vos efforts. Vous remercier, vous et ce qui concerne - Geoff

lupus barcelona - world lupus day

2009-05-15T02:03:00.001-07:00

I'd like to share these photographs with you.

Our friends from Spain, The Associació Catalana de Lupus E.G, celebrated World Lupus Day with 'I Walk The Barcelona' for lupus awareness.

It was a wonderful effort - imagine how many people saw that World Lupus Day banner!

If you have any photographs from World Lupus Day, or other events, I'd be happy to post them here.

For more information about Associació Catalana de Lupus E.G:
Diputación 227 Pral .1ª B08011 Barcelona
Tel. 93 453 62 14
acleg@hotmail.com
http://acleg.entitatsbcn.net/

Me gustaría compartir con ustedes estas fotografías. Nuestros amigos de España, la Associació Catalana de Lupus EG, que se celebra el Día Mundial de Lupus con 'El camino de Barcelona "para el lupus conciencia.

Fue un maravilloso esfuerzo - imaginar cuánta gente ha visto que el Día Mundial de Lupus bandera! Si usted tiene alguna de las fotografías del Día Mundial de Lupus, u otros eventos, me gusto publicaremos más información sobre here.

For Associació Catalana de Lupus EG: Diputación 227 Pral .1 ª B08011 Barcelona
Tel. 93 453 62 14
acleg@hotmail.com
http://acleg.entitatsbcn.net/

sensational lupus awareness in indonesia

2009-05-12T02:36:00.000-07:00

I'd like to share with you a wonderful article written by Dian Syarief of
Care for Lupus Indonesia. With World Lupus Day in mind, Dian wrote this article that was published in the Jakarta Post newspaper.

Jakarta is a city of over 8 million people, and in a country of over 230 million citizens. It's a wonderful achievement of Dian to raise such awareness and inform so many people of how lupus affects so many people, not only in Indonesia, but all around the world.

To read the article, click the link above or follow this link:

http://www.thejakartapost.com/news/2009/05/10/lupus-how-make-friends-with-enemy.html

I've listed more information about Care For Lupus (Indonesia) on previous posts here.

Thank You Dian!

happy world lupus day

2009-05-10T01:54:00.000-07:00

Our one day of the year has finally arrived and I'm wishing everyone a happy and healthy World Lupus Day.

I've added a link courtesy of The Lupus Foundation of America who have listed global events for World Lupus Day on the WLD website: Click here to see what others around the world have planned.

Regards as always and many thanks to everyone around the world trying to make a difference, Geoff.

world lupus day - spain

2009-05-07T03:08:00.000-07:00

I'd like you know about a wonderful effort from our friends in Spain.

The Lupus Association Catalana invites everyone to celebrate the May 10 World Day for Lupus with "I Walk the Lupus" in Barcelona.

You're are encouraged to come with family, friends and acquaintances.

The task is to make disclosure, as in the rest of the world.

The meeting point is at 10:30 h in Paseo de Gracia. (At La Pedrera in C / Provenza). There's a tour of the Avenida Diagonal, to the Holy Family, where then they'll proceed to read the Manifesto of the DML.

Suitable material: sport shoes, visor, white shirt and carrying essentials that you need - ie: photo protective cream. It's not to be missed if you're in this part of the world on WLD.

To find out more about the Lupus Association Catalana, click here: http://acleg.entitatsbcn.net

I'll post the details in Spanish below, as we now have many people from Spanish speaking countries visiting this blog.

"LA ASOCIACIÓN CATALANA LUPUS E.G. Os invita a conmemorar el 10 de mayo el Día Mundial del Lupus con la "I Caminata por el Lupus" en Barcelona, te animamos a que vengas con familiares, amigos y conocidos. El cometido es hacer divulgación como en el resto del mundo. Punto de encuentro a las 10:30h en Paseo de Gracia. ( en la Pedrera en la C / Provenza). Recorrido por la Avenida Diagonal, hasta llegar a la Sagrada Familia, en donde se procederá a la lectura del Manifiesto del DML. Material adecuado las zapatillas de deporte, visera, imprescindible llevar camiseta blanca y a los que os haga falta crema foto protectora. ¡Os esperamos! Associació Catalana de Lupus E.G. Diputación 227 Pral.1ª B 08011 Barcelona, España. Tel. 93 453 62 14 acleg@hotmail.com http://acleg.entitatsbcn.net"

My sincere regards to all my Spanish friends and wishing you around the world, all the best for World Lupus Day.

Geoff (Jeff) Thomas.

world lupus day - the history behind it

2009-05-05T02:07:00.000-07:00

Yes... World Lupus Day is this Sunday - May 10!

But how did it all begin?

The first-ever World Lupus Day observance occurred on Monday, May 10, 2004, coinciding with the 7th International Congress on SLE and Related Conditions in New York.

Sandra C. Raymond, President of the Lupus Foundation of America, and Brian Hanner, Director of Lupus UK (United Kingdom), were co-chairs for this inaugural worldwide awareness event.

World Lupus Day was developed to focus on the need for improved patient health-care service, increased research into the causes of and a cure for lupus, enhanced physician diagnosis and treatment of lupus, and better epidemiological data on lupus globally.

An international steering committee representing lupus organizations from nine countries met in Eaton (UK) on January 23 and 24 (2004) to finalize plans for World Lupus Day activities around the globe.

An Australian friend of mine, Karen, was on the steering committee:

" What happened was that we all went over to Eaton to actually agree on the wording of the proclamation, the emblem, best way to get publicity and support etc etc. This was after months of hard work prior to the meeting sending emails back and forth. Who likes what etc.

After the meeting we went home, and then May 10 was the launch date all over the world and the official launch was in NY at the Conference."

Sincere thanks to all those who had the foresight to establish a day 'of our own' and for all your hard work - it won't be forgotten.

Regards as always, Geoff (Jeff) Thomas.

world lupus day 2009

2009-04-26T01:34:00.001-07:00

I know everyday here at The Wide World of Lupus is World Lupus Day, but our official day just happens to be May 10.

The World Lupus Day Proclamation was first developed in 2004 when an international steering committee representing lupus organizations from 13 different nations met in Eaton, United Kingdom to organize the first observance of World Lupus Day.

I know this coincides with Mother's Day in America - but it's our one day of the year to share with others and raise valueable awareness. And besides - how many moms and daughters have to deal with this disease?

It's a great opportunity for awareness around the world and I'll try to keep you informed of what everyone has planned for this occasion.

Likewise, please reply here if you would like to promote your WLD activities.

Regards as Always, Geoff.

lupus - a dog of a disease

2009-04-20T04:03:00.000-07:00

As many would be aware, the term lupus, originates from the Latin for wolf.

But the question has been asked here on another post, "Could my dog have (discoid) lupus?"

And the answer is yes, judging by all the information out there.

Millie, the pet of former US President Bush, was reportedly diagnosed with discoid lupus... And there are many canine websites offering dog owners details about lupus issues with their 'best friends'

I mentioned this during a talk at a seminar in rural Australia last year, and there was actually a dog diagnosed in the country town of Orange.

An interesting link from our friends in the United Kingdom regarding this issue is - lupus.org.uk - lupus in animals

I suppose it just goes to show we're not alone. 'Man's best friend' has to deal with this as well.

(Or should I say, 'Our best friend?' - sorry girls!)

It's something that may be forgotten (and could be an avenue for further awareness), though it proves that everyone with lupus is not alone - whether we have four legs or two!

Best wishes to all the poor puppies who can't google - Geoff.

lupus alert in mauritius

2009-04-09T23:06:00.000-07:00

Over the past two years I've had the pleasure of being in touch with Babs and Dalilah from Lupus Alert in Mauritius.

Lupus Alert is another one of those great organizations raising awareness and offering support throughout the world.

Lupus, the disease with a thousand faces, was unheard of in Mauritius before the first press article on Dalilah Kalla, who came out public with her suffering, traumatic experiences and her agony at the very young age of 15 in July 1999.

The idea of setting up Lupus Alert in Mauritius to support Lupus patients was initiated by Babs Venkatasamy after a private visit to the UK to meet Brian Hanner, former Director of Lupus Support in the UK, medical specialists and representatives of Lupus support groups around the UK. Lupus Alert was launched in January 2000 as a non-profit, charitable organisation, which has since endeavoured to make the Mauritian public conscious of a disease for which no cure is available.

To learn more about Lupus Alert & the issue of lupus in Mauritius, please visit the Lupus Alert website.

Well done Dalilah & Babs... Geoff.

geoff on lupus radio

2009-04-03T00:36:00.000-07:00

Not long before riding that bicycle around America, I went back to school and studied radio broadcasting with all the kiddies!

I knew one day, that experience would become really helpful, like my radio interviews while on the road in The US.

So it's exciting to announce a new blog radio program dedicated to lupus and mixed connective tissue disorders.

And I'm really excited to be part if it and helping out @ http://www.blogtalkradio.com/LupusMCTD

It's early days, but Kathy, Kim and I have some grand plans to get the message out there on the digital 'airwaves' - and you never know what might come of it in the future.

If you'd like to put a voice to the guy compiling this blog just click here or visit http://www.blogtalkradio.com/LupusMCTD/2009/03/31/Coming-Soon

I've added a blog radio tool on the left of this post. Kathy kindly interviewed me last week and and you can listen to the latest episodes via the widget/tool in the sidebar.

I'll update everyone with future programs here and also let you know how you can join in 'on-air' - despite where you live.

Regards as always, Geoff...

setting a record for lupus

2009-03-25T02:35:00.000-07:00

Just last week I opened an email to read of an inspirational journey for lupus and I must share it with you.

Chris Paradysz told me about his plan to attempt to break the current 24-hour cycling track record at the Valley Preferred Cycling Center near Allentown, Pennsylvania. The current record is 391.29 miles (629.72 kilometers) in 24-hours.

Chris added:

"I should tell you that I was just a normal dad with a few extra pounds who liked to ride his bike on the weekends. But my oldest daughter convinced me I needed to take on a big, new challenge.

She’s in college now, but has been living with lupus since she was in grade school. It’s a terrible disease that had caused her immune system to go out of control, wreaking havoc on her entire body, causing long hospital stays, and a lot of scary sleepless nights for her mother and me.

But now that we’re out of the woods and Allie is off at school, I’ve decided it’s time to do something on behalf of the 1.5 million Americans who are bravely battling lupus each day. I know that no matter how much sweat, pain and suffering this attempt may cause me, it’s nothing compared to lupus. But perhaps in my quest, I can raise some money and awareness for an organization leading the fight for a cure: The S.L.E. Lupus Foundation."

For someone who's spent 'a few' hours on a bike, I can understand the effort and passion to help others who are doing it a lot tougher than ourselves.

But I'd really like you check out Chris' website and links: http://www.lifewithoutlupus.org/ to learn more about his attempt and to offer him support. Chris will attempt to break the record, beginning April 25 and I hope to keep you updated of his progress. Like the video above, he also has some great info and media on his website.

Well done mate and we're thinking of you & Allie!

As Always, Geoff.

living with lupus - a forum for australia & the world

2009-03-20T01:43:00.000-07:00

So you have lupus and nobody understands - where do you go?

In some countries there are national organisations who have forums or message boards. It's an opportunity to interact with others with lupus.

But many of us don't have forums close to home, so we visit sites in America, The United Kingdom, Germany, Spain or anywhere around the world where we can find some support and meet some fantastic new friends.

Until recently, people with lupus in Australia haven't had a forum they could relate to. But Maz from South Australia decided to start Living With Lupus.

"I wanted to reach out to other Aussie sufferers as well as keep in contact with my American friends and that is why I started it."

Maz has been interviewed by The Lupus Foundation of America's informative magazine Lupus Now, and I asked her why she was so passionate about starting a forum and what her hopes were for the project.

"I hope to be able to reach out to those Aussies who think there is NO support here in Oz, I know how it feels to feel alone and not have anyone understand what you go through, if the forum stops just one person from feeling that way, well it has done it's job!"

It's fantastic that Australian's finally have a place to chat and discuss their lupus issues. But Living With Lupus is for everyone around the world - so please feel free to take a look at a great new forum.

I'd really like to promote your favourite forums here so others can find a place where they feel comfortable talking to others who understand lupus. If you have a favourite lupus site or forum from anywhere around the world, please tell me about it and send me an email.

Best Wishes... Geoff (Jeff)

lupus international

2009-03-09T21:47:00.001-07:00

I'd like to share with you the details of another great lupus organization - Lupus International.

Lupus has no boundaries. It affects people of all nationalities worldwide. Lupus International's programs currently touch lives across the United States and they are able to interact with leading medical institutions in the U.S. and around the world. Lupus International also deliver portable support programs that can be easily translated into multiple languages via the internet.

The primary function of Lupus International is to alleviate suffering for lupus patients through patient services, including education, early detection of undiagnosed cases through awareness promotion, and to eradicate lupus by supporting lupus research.

There is hope. Since 1983, Lupus International have provided thousands of people with educational and supportive services. They assist those affected by lupus to live fuller, more productive lives.

For more info about Lupus International, click on the logo above or visit their website here and take a look around. It's great to see an organization assisting those with lupus worldwide - Regards as always Geoff.

organ donation and lupus

2009-03-04T01:06:00.000-08:00

I recently received an inspiring email from Pam who lives in the state of Illinois in America.

And she brought to my attention, the often over-looked topic of organ donation and how important it is. Thankfully, many countries now have organ donation schemes and organisations available. I know here in Australia, when we renew our driver's licence, we have to nominate if we wish to donate our organs - and this is noted on our licence.

But here's Pam's story:

"My name is Pam , I am a Lupus patient.

I was diagnosed with Lupus Nephritis in 1993 at the age of 20.

I have been able to lead a very fulfilling life. I married, had 2 successful pregnancies and became self-employed, with minimal side effects from Lupus. Because I had severe damage to my kidneys from Lupus, I always knew I would some day need dialysis or a kidney transplant.

I placed my name on the organ transplant list in 2004. Unfortunately my kidneys showed greater deterioration and dialysis was eminent. November 2005, I started dialysis. It was a grueling 3.5 hrs ordeal 3 times per week hooked up to a machine.

I was lucky, and on May 22, 2007, I received the gift of life from a deceased donor. No longer did I have to be tethered to a machine. I now have increased energy, can spend more time with my kids and give back to the community in more ways than I could ever before. I have an increased awareness that I am not the only one who deals with a chronic illness. I will never be "free" from Lupus.

Though I now have a functioning kidney, the chance for Lupus flares are always possible. Lupus is an illness that deserves more research and awareness. Lupus can be confusing and discouraging to those of us affected. The general public has little knowledge as to what Lupus is. Lupus awareness must be spread."

Pam is also a volunteer for the the Gift of Hope in Illinois. She also presents a program to high-schools in the area about the importance of organ donation. And she is a wonderful lupus advocate and has a blog by the same name. Check out The Lupus Advocate.

Thanks so much Pam! We can't forget organ donation and its importance when it comes to lupus issues.

Geoff.

take action - lupus advocacy day

2009-02-28T02:54:00.000-08:00

Come to Washington, DC for the Lupus Foundation of America’s 2009 Advocacy Day March 2-3, 2009

It was 50 years ago that the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus. The Lupus Foundation of America (LFA) invites you, your friends, and family members to join lupus advocates from across the country in Washington, DC for the 11th annual Advocacy Day by advocating for funding that will lead to safer, more tolerable, and effective lupus treatments.

Even if you cannot be in D.C. for the L.F.A.'s Advocacy Day, here's what you can do from the comfort of your own home in America.

Call your Representative and Senators and tell them to provide more funding for lupus research. To find your Senators and Representative, go to http://www.capwiz.com/lfa and click on the link "Call your Members of Congress Tuesday, March 3rd!" Then you will enter your zip code, and get the contact info for your senators and representative.

Send an e-card. Raise awareness about lupus and the need for new treatments by sending your friends and family an e-card. Go here to send an e-card.

Donate. With your donation The LFA can continue to fund cutting-edge lupus research. Go here to make a donation.

For more information please visit a couple of great sites:

The Lupus Foundation of America
On The Road To a Cure - The Official LFA blog.

I just wish I could be there too - Geoff

cruising for awareness

2009-02-25T23:50:00.000-08:00

The Suzuki Owners Club is touring Tennessee starting on March 2nd in Memphis, to increase awareness of motorcyclists as Motorcycle Safety Awareness Month approaches. The tour will end June 6th 2009 in Johnson City at its Annual Southeastern Rally.

But in addition to Motorcycle Safety Awareness, lupus awareness and the disease itself, will be a major focus for Stone Anthony, the President and Founder of the S.O.C.

Stone's mother battled with lupus and he is passionate about fundraising in the hope of a cure.

Stone and all the other participants are kindly raising cash for Lupus research via The Alliance for Lupus Research.

The ride will cover 76 cities in 76 days - Memphis to Johnson City and everywhere in between!

The S.O.C. are also giving away two Suzuki Brand Motorcycles plus, over 50 additional items. Donations go to the Alliance for Lupus Research and some other fantastic causes. You can check out the website, buy a giveaway ticket and follow the tour by clicking here.

You can also contact Stone via the website... Well done mate and best wishes. I'm just jealous you guys have got motors on those bikes!

Geoff.

3 months - 1001 visitors - 50 countries

2009-02-20T03:05:00.000-08:00

Only three months ago I started this blog to raise awareness worldwide and to show how lupus affects millions of people despite where we live.

Today we've had visits by over 1000 people, but more importantly, from people in 50 different countries.

I'm surprised this has happened so fast... but I'm not surprised so many people are suffering all over the world. I hope this site can continue to raise awareness and show how serious our condition is everywhere.

Thank you so much for your kind emails and comments. And I'd always like to post topics about lupus all around the world. So if you'd like to tell me about your organization or lupus in your country, please contact or email me.

Kind regards to all from Geoff!

lupus in indonesia

2009-02-15T00:21:00.001-08:00

When I completed my bike journey around America, I was determined to learn more about lupus around the world. And over the past two years, I've been in contact with Dian from the Syamsi Dhuha Foundation in Indonesia.

The Syamsi Dhuha Foundation - or 'Care for Lupus' - is a great organization from our friends in Indonesia.

And in Indonesia, like everywhere else, not many people know about Lupus.

Syamsi Dhuha began from realising the value of this experience. Initially Syamsi Dhuha, through one of its programs, 'Care For Lupus', encouraged the buddies of ODAPUS (people living with lupus) and their families, through various activities that benefit communities beyond the lupus circle.

They continue to raise awareness and offer support in another country where people are suffering from this terrible disease.

Thanks Dian for all your great work and best wishes to you all in Indonesia - Geoff

wild fires in australia

2009-02-09T23:40:00.001-08:00

This is not exactly a lupus topic, but over the past few days, I've received many emails from the worldwide lupus community regarding the devastating bush fires in Australia.

I live a lot further north of where this tragedy happened, but I have many friends in the State of Victoria, and I've travelled to Melbourne often to photograph the Australian Open Tennis and support my Richmond Tigers football team. I also met so many kind people riding through Victoria in 2003, when I travelled across Australia.

To see so many people lose their lives in any natural disaster is heart-breaking, and often puts things in perspective. Along with the many who have emailed me, my thoughts go out to the families who have lost loved ones down south.

Geoff.

a great role model from canada

2009-01-31T15:52:00.000-08:00

Over the past two years I've had the pleasure of communicating with Kathy and The Lupus Foundation of Ontario in Canada. I've learnt of their great efforts and recently I've been able to 'catch up' with a great role model from Quebec, Carolina Pineda.

Carlolina has had articles published in The LFO's magazine, Lupus Talk, and she's kindly allowed me to share them with you. I'm sure you'll find her words enlightening and inspiring - not to mention her fantastic efforts.

This first article is an edited speech Carolina delivered at the 7th Annual Lupus Patient Symposium last year. I'm sure you'll enjoy it and many thanks again Carolina.

"Let me begin my story at the beginning. I was diagnosed with lupus 12 years ago at the age of seventeen. Like most of you I imagine, I had never heard of this disease and knew nothing of what my life might look like years down the line. I sort of figured that as soon as I recovered from what I had learned to call my first flare things would simply go back to the way they were.

I would prepare for my high school graduation like the rest of my peers, perhaps do some travelling, and then pursue a university education as I had intended. In the end, things did go accordingly. Though there were certainly some difficult moments, I tried hard to maintain a sense of normalcy, a sense that I was not unlike other people my age. As part of this goal, I kept much of the physically and emotionally difficult parts of my experiences to myself, rarely acknowledging that this disease played such a central role in my life. As a means of coping with my experiences, this approach got me through the first 10 years of living with lupus.

Not surprisingly, however, this strategy ran its course. The moment finally came when I realized it was just too much effort to ignore what was going on in my life. I began to recognize that a large part of who I had become as a person was intimately connected to my experiences with lupus. Thus, I would not be the very individual who is standing in front of you had I not walked, if even very slowly at times, for miles and miles in my own shoes. For me, this revelation was transformatory and it is precisely here that I began to witness the most surprising twists in my life since being diagnosed with this disease.

The first of these twists presented itself in the context of my studies at McGill University. You see, at the same time that I began to appreciate just how complex my life experiences were as a result of lupus, the more I wanted to know how this disease was affecting other people. This lead me to reorient the entire course of my doctoral research in anthropology towards an exploration of lupus as it is experienced in the life of others. How do other people cope with the chronic nature of lupus symptoms, their invisibility, and their unpredictability? What meanings do individuals give to their experiences with this disease of 1000 faces? What role do factors such as gender and ethnicity play in creating individual experiences of illness?

Just three years ago, if you had asked me if I could envision myself asking such questions in the future, I would have replied with a resounding no. To me, lupus was something I thought of only when I had to and the mere prospect of studying it critically was not an option I had ever considered. This new research direction came as much of a surprise to me as to anyone who had known me for a long time and was accustomed to hearing very little about lupus, the general state of my health, and the difficulties I was having on a day to day basis.

The second surprising twist in my life came alongside my association with Lupus Quebec and Lupus Canada. I really never imagined myself taking on various roles as a volunteer for these organizations. While I was aware of their existence, I never felt I had anything to contribute to the lupus movement in Canada. It did not take long, however, to discover that this movement is driven by the force, spirit, and determination of people just like you and me and that there are opportunities for all of us to become engaged in the areas of activism and advocacy, research, fundraising, and support. As an added bonus, the time and energy I have invested as a volunteer has been paid back many times over through enriching experiences that have significantly broadened my understanding of what it means to live with lupus both in Canada and abroad.

In May of last year, for example, I had the privilege of representing Lupus Canada at the 8th International Congress on Systemic Lupus Erythematosus in Shanghai, China. On so many levels, this was the opportunity of a lifetime. From experiencing the rich cultural traditions of one of the oldest civilizations in human history, to having direct contact with internationally renowned researchers and scientists working on lupus, to networking with other individuals representing patient-led organizations around the world, this trip was unforgettable.

At an event titled the Lupus Leaders Forum, I engaged with lupus activists from countries as diverse as Belgium, Germany, Indonesia, Argentina, Spain, Mauritius, Norway, Malaysia, the United Kingdom, and the United States in a day-long discussion on the successes and challenges of working to support people living with lupus, as well as their families, and caretakers. As we took turns sharing experiences from our home countries, it became clear that neither underfunding, nor unresponsive local governments, nor widespread ignorance about a disease that affects more than 5 million people across the globe would get in the way of a shared goal to improve the lives of people with lupus.

While deepening my commitment to the lupus movement and bringing a new sense of meaning to my work as a researcher, the Shanghai congress presented me with another surprise that completes the trilogy of twists in my life since being diagnosed with lupus. In the year following the event, fellow participants of the Lupus Leaders Forums have become more than my allies in activism; they have also become dear friends. The isolation I experienced through the first ten years of living with this disease has finally found its antidote in a network of support that spans across continents and cultures.

Who would have predicted that I would one day get advice about dealing with prednisone from someone in Belgium or that I would receive kind words of encouragement from a friend in Argentina? Who could have known that over in Spain Blanca would be thinking about me on World Lupus Day and that frequent hellos would arrive in my in-box from two friends with Lupus in Indonesia?

Even here in Montreal I am not alone in dealing with this disease. By coordinating Lupus Quebec’s monthly support group, I have found myself surrounded by individuals of all ages and backgrounds whom I now consider both friends and role models. As friends, for though it is a similar diagnosis that brings us together, there are a whirlwind of shared experiences, emotions, worries, and triumphs that solidify the bond. As role models, because I never leave a meeting without a better sense of knowing how I might tackle some of the bigger and smaller challenges that I face right now as a consequence of my health or those that I might face one day in the future.

As role models also because with each story that passes between us I am reminded that in life there is always a bright side, a reason to laugh, and an obligation to be tender to oneself as well as to others in good times and bad."

By Carolina Pineda

vitamin d

2009-01-20T00:30:00.000-08:00

Vitamin D is a major issue for lupus patients. So I thought it would be easy to supplement Vitamin D with various foods. Naturally, lean meats, fish oils and certain essential fats can assist. But it isn't that easy to supplement Vitamin D through diet alone.

And there are risks for people with lupus taking too much Vitamin D as a supplement - so it is always best to seek professional medical advice with this issue.

But I would like to hear from people and how they deal with Vitamin D deficiency and what foods have helped. Calcium is another diet issue that can assist with healthy bones.

I know many people in certain countries can't get fifteen minutes of sunshine a day, or can even cope with being in the sun for fifteen minutes. But I'd be really interested to read your issues with Vitamin D and lupus.

Regards Geoff.

lupus language translation

2009-01-10T23:49:00.000-08:00

The Wide World of Lupus is now even more global in 2009. This website - lupus blog can now be translated in the following languages:

انقر فوق "مترجم جوجل" على هذه الصفحة لالواسعة القفر الذئبة في اللغة العربية,
Кликнете върху "Google Translate" на тази страница, за Широкият свят на Лупес език в България.
Feu clic a "traductor Google" en aquesta pàgina per a The Wide World of lupus en llengua catalana.
点击“谷歌翻译”本网页上的广泛世界的狼疮我国语言, 點擊“谷歌翻譯”本網頁上的廣泛世界的狼瘡我國語.
Kliknite na "Google Translate" na ovu stranicu za Wide World of lupus jezika u Hrvatskoj.
Klikněte na "Google Translate" na tuto stránku pro širokou Svět Lupusi v českém jazyce.
Klik på "google oversætter" på denne side for den vide verden af Lupus i Danmark sprog.
Klik op 'Google Translate' op deze pagina voor de wijde wereld van Lupus in de Nederlandse taal.
I-click ang "google translate" sa pahinang ito para sa mga Ang World Wide ng Lupus in Philippines wika.
Klikkaa "Google Translate" tällä sivulla The Wide World of Lupus Suomen kieli.
Cliquez sur "google translate" sur cette page pour le monde de la langue Lupus en France.
Klicken Sie auf "Google Translate" auf dieser Seite für die weite Welt des Lupus in Deutschland Sprache.
Κάντε κλικ στο "Google μεταφράζει" σε αυτή τη σελίδα για το World Wide Λούπους της γλώσσας στην Ελλάδα.
הקל "Google לתרגם" בדף זה עבור לגמרי העולם של זאבת בעברית שפה., पर क्लिक करें "Google" इस पृष्ठ पर वर्ल्ड वाइड एक प्रकार का वृक्ष के लिए भारत में अनुवाद / हिन्दी भाषा.
Klik "google translate" pada halaman ini untuk The World Wide dari Lupus dalam bahasa Indonesia.
Fai clic su "Google Translate" a questa pagina per il mondo di lingua Lupus in Italia.
をクリックして" google "とはこのページでは、広い世界狼座のための日本の言語で翻訳する。
클릭에 "google"이 페이지에있는 넓은 세계 루퍼스 한국의 언어에 대한 번역.
Noklikšķiniet uz "google translate" par šo lapu The Wide World of Lupus Latvijā valodā.
Spustelėkite "Google Translate" šiame puslapyje "The Wide World of Lupus Lietuvoje kalba.
Klikk "google oversette" på denne siden for Wide World of lupus i Norge språk.
Kliknij przycisk "Google Translate" na tej stronie The Wide World of Lupus w Polsce język.
Clique em "Traduz Google" nesta página para O Wide World of Lupus em Português / Brasil língua.
Apăsaţi "Google traduce" de pe această pagină pentru lumea largă de Lupus în România limba.
Нажмите кнопку "Переводчик Google" на этой странице для широкого мир Lupus языка в России.
Кликните на "Гоогле Транслате" на ову страницу за Уиде Уорлд оф ЛУПУС у Србији језику.
Kliknite na "Google Translate" na túto stránku pre širokú Svet Lupus na Slovensku jazyku.
Kliknite na "Google Translate" na tej strani za široko World of Lupus v Sloveniji jeziku.
Haga clic en "traductor Google" en esta página para The Wide World of lupus en España el idioma
Klicka på "Google Translate" på webbplatsen för The Wide World of Lupus i Sverige språk.
Натисніть кнопку "Перекладач Google" на цій сторінці для широкого світ Lupus мови в Україні.
Click vào "google dịch" trên trang này cho các thế giới của lupus tại Việt Nam bằng ngôn ngữ.

< Click on your language with google translate.

I will be posting more interesting lupus stories from around the world as soon as possible. And I'm always interested to hear your lupus story!

Regards as always,
Geoff.

a happy & healthy 2009

2009-01-02T16:06:00.000-08:00

Hello & Welcome to 2009...

I'd like to wish everyone a Happy New Year, for those around the world who observe it at this time of year, and the best of health for everyone dealing with lupus.

I also hope that 2009 is a year where we can make further progress, as so many dedicated people continue the search for a cure.

Creating this worldwide blog has been a big learning experience over the past two months, but it has been so rewarding, as I have received messages from some wonderful people from all over the world. It is also so interesting how despite where we live, so many people have something in common and share so many experiences - and all seem to live with hope and passion.

I'd like to continue bringing you lupus stories from everywhere. And if you'd like to inform people of how your city, town or country is dealing with lupus, just let me know.

Also, The Lupus Foundation of America has detailed contact information for lupus groups all around the world, so to find lupus information, assistance or an organisation close to your home, just click here.

Regards as always,
Geoff.

now a lupus song - and season's greetings!

2008-12-19T23:21:00.000-08:00

Firstly, Season's Greetings to all visiting The Wide World of Lupus Blog.

Many of you would've heard the beautiful song, White Flag, by British singer Dido. This video has already had over three million hits on YouTube:

Dido has recently released a new album titled, Safe Trip Home.

The centerpiece is Grafton Street, a song dedicated to her father who died from lupus in 2006.

For the full lyrics (which are extremely moving) and to listen to the song, click here:

http://www.didomusic.com/gb/music/songs/grafton_street/

Augie March, a successful Australian band, has also recently released a song titled Lupus. I'm still trying to verify what inspired the title.

For more info on the band click here:

http://www.augie-march.com/

I'd just like to wish everyone the best of health at this time of year. And as I've stated on this blog, this site is for everyone, despite where you live or what your beliefs are.

I also hope that in 2009 we can all get together to beat this disease.

So a sincere Happy Holidays, Season's Greetings, Merry Christmas or Best Wishes to you all.

Kind Regards as always,

Geoff

a movie with a lupus theme - lupus on the big screen

2008-12-11T01:55:00.000-08:00

Can anyone recall the last time an international film had a plot relating to lupus?

I've just discovered My Only U, courtesy of our friends in The Philippines.

I've added a synopsis below and it was recently screened in America on limited release. I'm not sure if there are copies available with subtitles, but it's refreshing to see the film industry recognise lupus - despite where the movie was produced.

And it's also nice to see a romantic/comedy theme rather than something depressing. You can search for more info online, and I understand it was a huge hit in The Philippines. I've yet to see the full movie, but if others can recommend it or offer an opinion, just leave a comment below.

Here is a brief trailer:

Bong, a tenement manager, has always liked his friend Winona but never summoned the courage to tell her of his feelings. He has no idea that Winona is also interested in him romantically.

One day, in the tenement he is managing, he receives final notes from their late neighborhood doctor’s assistant: one for him, one for Winona. When he checked his, he found out he was given a clean bill of health. He was worried for Winona who belongs to a family whose women all die before the age of 25.

Bong knows Winona is turning 25 soon and the medical notes might just confirm that so-called curse.

Bong opens the letter from the doctor: Winona has lupus and she will die soon.

Bong vows to make Winona’s remaining days happy and perfect. In the process, they became closer to each other and begin to fall in love. When Winona finally turned 25, she didn’t die. She finds the letter sent by the hospital and discovers her results were actually negative.

Bong was thrilled to know about the good news. But then, whose positive results did he actually read ?

a message from bill clinton - the alliance for lupus research on the world wide web

2008-12-01T23:19:00.000-08:00

Happy December!

Many people mightn't know that last year I represented a fantastic organisation by the name of The Alliance for Lupus Research.

The ALR first contacted me after an article was written about my journey in Indiana's The South Bend Tribune. Over thousands of miles, I had their support and knew I was representing a great cause. I finally got to catch up with the ALR after hitting the finish line in New York and at a fundraiser when The New York Jets played The Miami Dolphins. I was also the subject of a fundraiser for the ALR at The Australian Bar in Manhattan.

Based in New York, the ALR funds lupus research worldwide. Their mission is to prevent, treat and cure lupus through medical research. Just as importantly, 100% of all donations are used exclusively to support research. The Board of Directors pay all operating expenses.

If you weren't aware, The ALR has a huge online presence and they have some really interesting sites you can check out.

There's Facebook: http://www.facebook.com/pages/Alliance-for-Lupus-Research/44101039807
MySpace: http://www.myspace.com/lupusresearch
And You Tube: http://www.youtube.com/myalr

There aren't many organisations who have the support of actors such as Michael Douglas, or an ex-president... they must be doing something right!

The Alliance for Lupus Research are so dedicated, and I'd urge you to check out the ALR's online presence as they continue to raise awareness and search for a cure. For anyone with, or interested in lupus issues, these links are invaluable.

Regards, Geoff.

i've found one of the most impressive lupus sites ever

2008-11-27T01:41:00.000-08:00

What I thought was going to be a weekly blog, where I could post a leisurely topic every Monday, has turned into something a little larger as the queue for worldwide lupus issues grows.

And midnight computer shutdowns are becoming frequent after all the emails - but that's okay. If this blog is raising awareness around the world, it can only be a positive.

Now, I'd like to know your opinion on this website link. I believe it's one of the most impressive lupus awareness efforts I've seen and it's courtesy of Diana and The Lupus Flare Foundation of Ontario, Canada.

http://www.flareforfashion.ca/index.html

I'm sure you'll agree... and if there are any other great sites out there, just let me know.

Regards, Geoff.

our lupus visitors around the world

2008-11-24T01:21:00.000-08:00

As many of you would have noticed, I generally post a new topic every week - and it happens to be on a Monday for some reason!

This week I came up with the idea for visitors to this blog to introduce themselves in a monthly post such as this and tell us about yourself or lupus in your part of the world.

I've basically allowed anyone to comment on this blog, so you don't have to sign-up to anything, become a follower, disclose your details or commit to this blog.

You're invited to comment on your own situation, discuss awareness, lupus research, lupus in general, how you found this blog, meet lupus friends around the world, or just to say hello.

I hope this can be a comfort zone for you to introduce yourself and realise that you're not alone.

We're all in this together.

Geoff...

world lupus month in october - is it relevant?

2008-11-17T21:55:00.000-08:00

I was just wondering how relevant World Lupus Month was in your part of the world?

Here in Australia, I can't recall it even getting a mention in the press. This may have something to do with the fact we don't have a national organization here to promote awareness, or the fact we're competing with so many other worthwhile causes - October is Breast Cancer Awareness Month too.

Here's a suggestion - let's make May our month.

I have heard that May is National Lupus Awareness Month in America, but isn't it time we all got together and made May a month for lupus around the world? It only seems appropriate to use the month of May to promote our cause when World Lupus Day falls almost in the middle of it.

In October, it just seems too difficult to stand out from the crowd.

Please feel free to correct me or offer your opinions.

Regards, Geoff.

stress & the smith antibody

2008-11-10T23:44:00.000-08:00

Ah... stress... one of my favourite topics.

Having cutaneous or discoid lupus, I'm supposed to be doomed by the sunlight. However, riding across Australia and through those American deserts, the sun didn't affect me. However, stress was the trigger for my diagnosis of lupus in 2003. I was working horrendous hours managing a business and going nowhere, when ugly lumps started appearing on my face.

That's the thing about lupus - we all suffer differently it seems.

I've since learned to take it easy to avoid any problems. But only this week I've had to drive 300 miles due to a work transfer, find a new place to live, arrange post office boxes, bank accounts, telephone services, Internet access, connecting electricity, and I still have to haul everything through the dust closer to the Aussie coast. And all this within two days!

Guess what?

The lumps are starting to return, so I'm back on the malaria pills.

The topic of stress was raised by Lupiebin in my previous post, as was another from Kim.

(Girls... you're welcome to comment again in this specific post if you like).

As for Kim's question regarding The Smith Antibody, I'd like to know more. I'll be honest here and admit it's a new one to me - and keep warm Kim - it's over a 100 where I am at the moment.

Regards as always, Geoff.

about geoff and this blog

2008-11-03T16:57:00.000-08:00

Thanks for visiting the wide world of lupus. I've started this blog as I continue to raise lupus awareness across the globe and it would be great to connect with lupies from all corners.

Now a little about myself:

I was diagnosed with a mild form of lupus in 2003 after cycling across Australia. When I finally decided to ride around America, I was in a position to make a difference as I wasn't suffering nearly as badly as others. I represented the Lupus Foundation of America and the Alliance for Lupus Research for 156 days and over 9000 miles. I've recently continued to promote our cause here in Australia by speaking at World Lupus Month seminars, although I'm determined to travel again as it's a love of mine along with writing and photography. I'm currently compiling two books about my journey and hope to promote lupus awareness when they're finally published in 2009 (fingers crossed!). You're welcome to learn more about me on my original website: http://www.bikeusa2007.com/ - Although I'm currently working on a brand new site and I will update the details in the near future.

Riding a bike and being on the road all day was a great experience, however it was disappointing I didn't get to catch up with many people suffering from lupus. Those who did get in touch with me offered so many kind words along the way and I've made some great friends as a result of the journey.

Through this blog, I'd love to discuss any issues you raise and connect with fellow lupies from all over the world - we're just a little isolated here Down Under.

Thanks so much and feel free to post a comment on this blog.

Regards Geoff.