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Choclit

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About Choclit

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    Madison, WI

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  1. I am very happy to announce that our review paper titled "Therapeutic Plasma Exchange for the Treatment of Systemic Sclerosis: A Comprehensive Review and Analysis" was just accepted for publication by the "Journal of Scleroderma and Related Disorders". JSRD is the top research journal in this field and is read by most researchers and clinicians who are focused on systemic sclerosis (scleroderma). My co-authors (all MDs or PhDs) have expertise in plasma exchange, rheumatology, blood rheology (physical properties of blood), and immunology. This paper is an expanded version of two research pos
  2. The ACR research poster was actually just a spinoff from a paper that I presented at the American Society for Apheresis last May. It was a comprehensive review of the 40 published papers on the use of therapeutic plasma exchange to treat SSc. We are turning that into a manuscript now for submission to a journal soon. Here is the handout version of the review poster: http://www.sclerodermainfo.org/pdf/ASFA-Handout-US.pdf.
  3. Treatment of digital ulcers is very difficult and often unsuccessful. You may find this research poster that I presented last November at the American College of Rheumatology Meeting in DC interesting as it is directly related to this topic: http://sclerodermainfo.org/pdf/ACR-Handout-US.pdf.
  4. The term I use when describing limited systemic scleroderma is "slower progressing". The term "mild" is really not an accurate way of describing this variant of systemic scleroderma. I don't think anyone would describe MS as "mild". Limited systemic scleroderma is at least at this level, often worse.
  5. Joelf, that is a good point to emphasize. There are many people who have positive ANA and antibodies that never develop functional disease. Also, there are the 5% to 10% of people who are ANA negative by IFA who clearly meet diagnostic criteria for systemic sclerosis. I do, however, always suggest trying to figure out what specific antibody you have if possible as it gives you important information on risk profile and issues like whether or not certain medications are safe to use.
  6. Amanda, there are three different antibodies associated with diffuse systemic scleroderma: Scl-70, RNA Polymerase III, and U3-RNP. U3-RNP is very rare but the incidence of RNA Poly III and Scl-70 is about the same, around 20% of of the total SSc population. RNA Polymerase III has a higher risk of early kidney involvement than Scl-70 and as a result prednisone can be very dangerous with this antibody as it can trigger scleroderma renal crisis (the risk is dose dependent). It is also risky with Scl-70 antibodies. I am not sure if the research has been done with U3-RNP since this is a very ra
  7. The key here with your positive ANA results and symptoms is to get detailed antibody testing. There are 8 antibodies for scleroderma that can readily be tested for. Here is a list from the Antibodies section of the "Scleroderma FAQ" on my Scleroderma Education Project website (sclerodermainfo.org): http://sclerodermainfo.org/faq/scleroderma-antibodies/. The three most common antibodies in systemic scleroderma are Scl-70, centromere, and RNA Polymerase III. With a standard ENA panel you were probably only tested for Scl-70 antibodies but some do include centromere, depending on the testi
  8. About longevity with limited systemic scleroderma... Research shows that patients with this disease variant, usually associated with anticentromere antibodies but also rarely with anti-Th/To antibodies, tend to live relatively normal life spans but with steadily increasing disability over time. The most dangerous complication with centromere antibodies, in particular, is pulmonary arterial hypertension (PAH) which eventually occurs in about 20% to 25% of patients with limited scleroderma. Most other patients will develop some impairment in lung functioning over time but in most cases wil
  9. Can you indicate which antibodies you were tested for and which one was positive? There are 10 separate antibodies currently identified with systemic scleroderma, as indicated in the Antibody section of the Scleroderma FAQ: http://sclerodermainfo.org/faq/scleroderma-antibodies/.
  10. Are you diagnosed with systemic scleroderma? Do you know your blood type? Last summer, the Scleroderma Education Project, a 501c3 non-profit organization focused on scleroderma education and research, conducted a preliminary survey of blood types among patients with diagnosed systemic scleroderma. We ended with 743 responses and some very interesting results. We are now working with statisticians at the University of Wisconsin in Madison to do the data analysis needed for the paper that we will be writing to discuss our findings. In the original survey, we did not ask about country of birth
  11. The Scleroderma Education Project (SclerodermaInfo.org) is a 501c3 non-profit organization focused on: 1) providing up-to-date, research-based educational information on systemic scleroderma diagnosis and treatments, and 2) advancing new research focused on understanding the role of abnormal blood rheology in systemic scleroderma pathogenesis. As part of our research efforts, we are conducting a brief survey on blood type distribution in patients with diagnosed systemic scleroderma. If you are formally diagnosed with systemic scleroderma, including diffuse scleroderma, limited scleroderma, CR
  12. This is the title of a new educational article on my Scleroderma Education Project website (SclerodermaInfo.org). Yes, You DO Have Internal Organ Involvement, But… Note: if you sign up on the Scleroderma Education Project home page, you will automatically be notified whenever any new posts are added to the website.
  13. I just reviewed the most recent literature and it gives a range for the US and Europe of from 150 to 300 per million population which gives a range of 48,000 to 96,000 cases. The studies are too inconsistent in methodology to see any trends.
  14. The research data from Mayes (2003) suggests that in the US there are about 58,000 cases of systemic scleroderma and 80% are female. I always blame my limited scleroderma diagnosis on the fact that I am a feminist! :-)
  15. It is my understanding that while this is not completely consistent among scleroderma researchers, the new trend is to use antibodies as the primary determinant of scleroderma subtype. Historically, only two antibodies where know to be associated with scleroderma: centromere and Scl-70. Patients with centromere antibodies typically have later skin involvement and it is almost always "limited" to hands (sometimes up to the elbows), feet, and face. In contrast, patients with Scl-70 antibodies have skin changes that were more "diffuse", including the trunk. This is where the names Limited Cut
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