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  1. Hi Cordy I know a few doctors who are specialists in Scleroderma. They are mainly Rheumatologists. If you have read about my articles, you will know that they are in London. If you live in London or anywhere else in the UK, you can ask you doctor to refer you to the Royal Free Hospital in London which is the only hospital in England and Whales that specialises in Scleroderma. Patients all over England and Whales go there and at times have to stay overnight for the numerous tests that are involved before coming to a final diagnosis. Otherwise, I am sorry if you do not live in the Uk and hope that somebody will manage to help you in your search. Regards Gladys
  2. Dear all Four years ago I was diagnosed with localised Scleroderma by the dermatologist who just a biopsy with not enough blood tests. At the same time, I was suffering from stocmach problems(reflux)and had a gastroscopy done. Actually it was Jan 2004 that I had the gastroscopy and in Feb of the same year I had the biopsy. I went to see the dermatologist after six weeks and was told that I have Localised Scleroderma. He showed me his medical book (pictures of people with localised scleroderma)and told me that I was lucky for it could have been systemic Scleroderma, the one that could affect a multiple of organs (heart, kidney, lungs etc) and he finished by telling me that if I want to know more about my condition, to search the net. I went home and started surfing the net and was very worried for as I happened to suffer from stomach problems, I thought that I have systemic scleroderma. Surfing the net suggested to seek the advice of a Rheumatologist, another expert in that field. A few weeks after the gastroscopy, I went for the results and was told that I had the inflammation of the oesophagus, the deudonum together with Hiatus hernia. It's then that I told the consultant that I am very worried about my condition and have been diagnosed as having localised scleroderma and wants to be referred to a Rheumatologist for a second opinion. This consultant was very helpful and he referred me to a Rheumatologist to whom I would be ever so grateful. The minute the Rheumatologist saw me, she asked me a lot of questions about how the hardness of the skin started, she sent me for a number of blood test and straight away without waiting for the blood tests' result, she said to me' I think that you have been wrongly diagnosed but did not tell me what my condition was. She said' I am going to refer you to the hospital which specialises in that condition'. I was referred to Royal Free Hospital in London and there I had a number of blood tests and this is how I was diagnosed with SCLEREDEMA OF BUSHKE. I was told that this condition is a very, very rare one; one in a million. If you have the same condition, I would like to hear from you. It would be good to know how many people suffer from this condition worldwide. You can e-mail me personally and get to know more about this particular disease. Kind Regards Gladys
  3. 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. Regards Gladys
  4. Hi Peggy I'm Gladys and suffered from Scleredema of Bushke, active Rheumatoid Arthritis and Sjoren's disease too. I have sleepless nights and in constant pain. My hands get numb mostly at night and I wake up unconsciously and rub them to get rid of the numbness. Do you have the same systoms? Before I was diadnosed with Scleredema the doctor thought that I have localised Scleroderma. I do hope you get better. I also I'm constantly n pain. Yesterday, my finger, the middle one on the right hand was very painful but what I can't understand, it was a bright and sunny day. Normally when it's damp and cold, this is when the pain is at its worse. Hope to hear from you soon. Have a nice sunday Regards Gladys
  5. Hi Pam Thanks for your e-mail. Ihave Scleredema of Bushke and was wrongly diagnosed the first time. They thought that I have localised Scleroderma. That was 6 years ago but in 2004, I was referred to the specialist hospital in Scleroderma and was told tha I have Scleredema of Bushke and not Scleroderma. Anyway, how long have you been suffering from Scleroderma, if I may ask. Are you on any medication? As for me, I haven't been given any medication as such but since I laso have active Rheumatoid Arthritis, I was prescribed Methotrxate which the doctor said will help with the Scleredema. The sad thing is that science hasn't find a cure yet for our condition. Let's hope that soon, they will come with some medication for us. Looking forward to hearing from you, all the best, Regards Glad N.b: Thanks for the hug, we do need it!!!!!!! Yesterday I was in pain all day with swollen figure.
  6. Hi Pamela I am Gladys and sorry, I seemed to have sent you the weong e-mail thinking that you are a patient suffering from Scleredema of Bushke while I just noticed that you are the support people. Sorry about that misunderstanding. Regards Gladys
  7. Hi Pam My name is Gladys and I'm 52 years old and live in the UK. I have Scleredema of Bushke and would like to communicate with people who have the same consition and see how we can help each other. I also have active Rheumatoid Arthritis and I am diabetic too. Do you have the consition and are you taking any medication. As for me I am not taking anything for the Scleredema but have been told that the medication for Rheumatoid Arthritis will help my skin. So far all the medication have not proved helpful. I was on methotrxate and came off it becasue of some skin problem. I was then prescribed Leflunomide which I have now discontinued for other side effect. I am now waiting to see my consultant and see what he says. Hoping to hear from you soon, Regards Gladys
  8. Hello Jimmy I am Gladys. I am 52 years old and live in teh UK. I have been diagnosed with Scleredema of Bushke in 2004 and lately I have also been diagnosed with active Rheumatoid Arthritis. I am constantly in pain and whatever I take soed not seem to alleviate my pain. I have Scleredema on my neck and back and would like to know more about your consition and maybe be able to compare our condition and medication. Hoping to hear from you soon Regards Gladys
  9. Hi, I'm Gladys and I have Scleredema of Bushke. I am 52 and I have also active Rheumatoid Arthritis. I mostly have the Scleredema on my neck and back. I would like to know more about your consition and the medication you are taking. Regards Gladys
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