[Guest]

Hi to all at The Lupus Site!

I was diagnosed with cutaneous lupus in 2003 after cycling across Australia. When I finally decided to ride around America four years later, 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. It's been too long since I've visited and lived in the UK.

I'm currently compiling two books about my journey and hope to promote lupus awareness when they're finally published in 2009 (fingers crossed!).

I've recently just started a blog titled: The Wide World of Lupus - and you're welcome to learn more about me by searching the internet for "Geoff-Thomas-Lupus"

It's my intention for people suffering from lupus all over the world to have a place to connect despite where we're from and to meet new friends internationally.

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.

Now I'm just passionate about furthering awareness internationally as we search for a cure - Personally I don't care who comes up with an answer as we're all in this together. I also make myself freely available for media interviews or to assist lupus organisations wherever they are in the world for newsletter articles etc.

It's just great that there are such fine sites like this one for people to connect and share their experiences.

Thanks so much for your time and I look forward to getting to know many of you... Regards as always,

Geoff Thomas
Australia.

 

[A1marva]

Hi from Australia,

Dear Geoff thanks to the owner of this site and all the moderators that help out on here, people all over the world already have a place that they can come to for moral support, for anwsers to our questions, concerning Lupus. And for a place to chat with regards to Lupus. This is the best Lupus site Bar None. It is the most professional run Lupus site and lupus chat online. The Mods that help out here are some of the finest human beings that I shall ever have a chance to meet. We who have found this Lupus site and chat are extremely lucky to be here. I believe that there will never be a better a place to come to connect than this site to meet people internationally. Geoff this is the finest Lupus site that will ever be. We welcome you to come and really get to know all that this site has to offer. And to get to know the Moderator's. And also enjoy all of us who have Lupus ,or who are touched by Lupus in some way. And you will reallly see that we already have the greatest Lupus site online.

Best wishes to you in your indevors
Sincerely, A1Marva

 

[marymackay]

Welcome Geoff

Hi Geoff

welcome to our site. I checked out your bloggs etc. so interesting that you were d/x with Lupus after you had cycled round Australia. You were very lucky to have been d/x so quickly. Many of us take years to be diagnosed in many places over the world.

I found it interesting that you then were sponsored in America to promote Lupus. Perhaps now you have your website set up, and more Lupus websites are becoming available in Australia again, you might like to do a second ride across Australia to promote Lupus/Sjogrens/Scleroderma, :wink2articularly in north Queensland-you would be very welcome.

Unfortunately some of us have had to struggle very hard to access specialists, even to find a GP who has any knowledge at all of lupus.

As you said in your blogs, many of us are very different in our lupus symptoms, and how they affect us. Whereas you are able to go out in the sun, I nowadays cannot in any way, and have to keep my house darkened. Many of us have so many recurring problems, and have to fly away from our homes for any d/x as we have no specialists.

I look forward to your posts, as you said you saw nothing in the Australian Press about Lupus Week, and I am extremely aware of that fact. I have many books, and downloads about many aspects of lupus/aps to make myself more knowledgeable as symptoms continue to make life more uncomfortable.

Being out in the sun can contribute to problems, and as a teacher I know that. Over the last 16 years I have had 5 skin cancers cut out. At the moment 4 stitches on my nose ,very sore and swollen, are to be taken out on Wednesday.

It would be good to have Australian figureheads for Lupus in our country, both men and women. All the best with your personal fight against Lupus, as it is an evolving fight over a lifetime.

 

[Clare.T]

Welcome to the forum Geoff !
I hope you'll find it very useful yourself if you have any problems with your lupus or need support from fellow sufferers from skin lupus which is so often neglected as it seems trivial in comparison with the ravages of systemic disease. Of course skin lupus won't kill you or even severely disable physically but it can do a good job of ruining lives with profound psycho- social impact.

I am a bit puzzled over you asking about the UK. This is a UK founded and based site, set up and maintained by Joanne the site owner and founder some 11 years ago. Many of us here are British.
We have a wide international membership mainly English language speakers British, Irish, American, Canadian, Australians and New Zealanders in proportion to the populations of their countries, with regular visitors from Asia and the Far East and a few Europeans and Scandinavians.


The two Lupus organisations are LupusUK with regional branches throughout the UK, and the St Thomas' Lupus Trust. St Thomas' Hospital London has the internationally renowned Louise Coote Lupus Unit.

See their websites
www.lupusuk.com

www.lupus.org.uk

I am curious about your skin lupus since most of us have to take great care with UV/sun exposure and you must have got a lot while you were cycling. Avoidance and protection is the first line of therapy. Our doctors would not be approving ! Is it under control now and are you on any medications ?

Bye for now
Clare

 

[onetay]

Welcome Geoff,

I am Tammy and anyone here that knows me will tell you I am crazy. Thought I would put my 2 cents in here. Sorry that you have lupus, but glad you found out so quickly. I think the sooner they find it the better your chance of limiting the damage it can do. I have sle (skin only so far but waiting for the organs), sleep apnea, migraines, and bone spurs just to start off with. When we get to know each other better maybe I'll share some more info. I am shy, can you tell?

Well, just wanted to say welcome and hope you join a chat one day soon.
Tammy

 

[KarolH]

Geoff,

Nice to meet you and love the spelling of your name, it is different. As you can see my mom decided to make the spelling of my name unique too. I am female and this spelling is indicative of a man in Europe. Don't ask me what my mother was thinking when she assigned me this name.:rotfl::rotfl::rotfl:

Anyway, Sorry about your diagnosis but cudos to you for biking for the cause. I am happy that your are physically able to do this. Keep up the good work.:wink2:

 

[Tictcha]

Hi Jeoff'its so nice to hear from some one who is so up beat it would do ya good,I am delighted that you have been able to achieve so much you give us all hope.cycling is tough at any time so fair play to you keep up the good work take care and stay well let us know what you get up to next'nice to meet you.

xxxTictcha.

 

[keebler]

Hi Tictcha,

This is an old thread the person that started this thread hasn't been here since June,27,2009.
You probably won't get a reply from him. This thread was started in 2008.
Love,
Lyn