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Scleroderma Family Day, Royal Free Hospital, London

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#1 gladigo



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Posted 17 May 2008 - 07:41 AM

Dear all

I had a very interesting day today. I went to a conference on at the Scleroderma Family Day by Royal Free Hospital in London. We had a guest speaker from Switzerland who did some reasearch with figures on 'Scleroderma male and female'. He took us through pregnacy in patients with Systemic Scle. He then spoke about sex in Sclero. patients both genders and available remedies. We also have a neurologist from Austrslia who is currently in London doing some reasearch. Another guest speaker was from Thailand. This Rheumatologist is here in London for 2 years and will go back to Thailalnd to deal with Sclero patients. This Rheumatologist said that patients in Thailand present the same features as patients in the UK and patients with Reynaud have the same symptoms although Thailand is a tropical country. Interestingly, we were told that 14 countries are going to work together and look into the condition and they have already started with Europe first and that there is going to be a data base of some 7,000 patients.

We also had the opportunity to visit the lab where we were shown cultures of tissues from biopsies and how the research team works. The clinicians are currently researching into genes and so on. Finally, we had time to ask questions to the various health professionals. We had also a very good spokeman who took us through the progression of the disease and how the cells react in the body; that was a bit complicated because of the terminologies but he did make it simple for the audience to follow the explanation with diagrams. It was a very good experience. This is actually a yearly conference,' a family day of Scleroderma patients'. I' looking froward to next year's one. It's the first time that I have attended this conference.



#2 Lillskuzi


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Posted 19 May 2008 - 09:10 AM

Hi Gladys

I was at the Family Day, too, and found it a wonderful experience. What struck me on the way home was how positive it all was, about the success in research and hopes for the future. No doom and gloom, and no focusing on symptoms or anything bad. And I agree, it was very well presented, informative and at an understandable level for patients as well as the professionals.

I, too, look forward to next year :-)

#3 CFMBabs


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Posted 20 May 2008 - 11:05 PM

We have conference's in Cheshire run by the Raynauds and Scleroderma Association.
I've been to a day out run by my hospitalal in Manchester and found it very informative and also a great chance to meet other sufferers.
We had guest speakers from health organisations and specialists in other fields connected with scleroderma.

I'm really glad that you found the day informative and enjoyed the day on the whole. It's such a confidence booster whan you know that some people out ther actually do care and are trying their best to conquer this disease.

Best wishes
Barbara xxx

#4 scampie5


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Posted 23 May 2008 - 04:03 AM

Hi I am realy upset as iasnt informed of the Scleroderma day at the royal free for the second year running sob sob

#5 Webby


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Posted 02 June 2008 - 12:08 AM

I so wanted to take my mum along to the family day, but sadly she was too poorly to travel down.

Maybe next year though!