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  2. It's True: Alcohol Helps You Speak a Foreign Language Better. Those who dabble in learning a new language sometimes find that alcohol – in moderation – helps them speak more fluently. Time Healthland, 10/20/2017. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Targeted proteomics reveals promising biomarkers of disease activity and organ involvement in antineutrophil cytoplasmic antibody–associated vasculitis (AAV). Promising biomarkers of disease activity, disease severity, and organ involvement in AAV with a targeted proteomics approach using serum samples have been obtained. PubMed, Arthritis Res Ther, 2017 Sep 29;19(1):218. (Also see Vasculitis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. Reassuring that the vaccine appearrs to be safe. I do remain concerned as to whether immunisation generally may cause Ssc flare ups, though my personal experience does not appear to demonstrate any adverse effects to date.
  5. Pandemic non–adjuvanted influenza A H1N1 vaccine in a cohort of patients with systemic sclerosis (SSc). The non–adjuvanted influenza H1N1 virus vaccine proved to be safe and effective, independent of SSc clinical subtype, disease severity or therapy. PubMed, Rheumatology (Oxford), 09/08/2017. (Also see Vaccinations) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Scleroderma and Sjogrens

    Hi Luwana, Welcome to Sclero Forums! As it happens, quite a few of us have both Sjogren's and scleroderma. They figure about 20% of people with scleroderma also have Sjogren's. It's also not unusual to be diagnosed with Sjogren's first, for any number of reasons. One reason might be because Sjogren's, and Hashimoto's (autoimmune thyroid disease), are thought to be "gateway" diseases to autoimmunity. But part of that might be because those diseases are more common and much easier to suspect and diagnose than many of the rarer and more unusual autoimmune diseases, such as scleroderma. Also, Sjogren's can "go systemic", imitating or overlapping with many symptoms of scleroderma. I don't know your particular situation, but many of us with overlaps tend to get delayed diagnosis, since things get so confusing.
  7. The FDA Just Approved a New Way of Fighting Cancer Using Personalized Gene Therapy. Immune–based cancer treatments are surging forward as the Food and Drug Administration (FDA) approved the second of a new technology called CAR T, this time to treat diffuse large b-cell lymphoma, a type of non-Hodgkin lymphoma. Time Healthland, 10/19/2017. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 11/14/2017
  9. Scleroderma Expert

    I'm really pleased for you, Tararae (I've sorted the name spelling for you! ) It's certainly worth seeing such a knowledgeable consultant; I do hope you have a very productive and satisfactory appointment.
  10. Scleroderma Expert

    I was able to get in December 7th to Dr. Trojanowski (not sure I spelled that right). I'm so so excited to be able to get in!!
  11. Residual disease activity and treatment adjustments in psoriatic arthritis (PsA) in current clinical practice. Remaining disease activity is present in almost two thirds of patients with PsA when scored by the treating rheumatologist, but triggers treatment adjustment in only a minority. PubMed, Arthritis Res Ther, 2017 Oct 10;19(1):226. (Also see Psoriasis and Psoriatic Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. Scleroderma Expert

    Hi Tararae, We have two listed scleroderma experts in Boston: The Scleroderma Center at Boston University School of Medicine (BUMC). and Massachusetts General Hospital. I imagine you'd have to make a prior appointment with either of them, before you go. I'm afraid I can't give you any personal experience of them, as I'm in the UK. Kind regards,
  13. Scleroderma Expert

    Has anyone on here gone to Boston to see a scleroderma expert? I'm trying to get in to see one the first part of December (we have to travel there for my daughter to see a physician at Boston Children's Hospital, so I'm hopeful they can see me at the same time). Did you have a good experience?
  14. Capillary loss on nailfold capillary microscopy is associated with mortality in systemic sclerosis (SSc). The avascular score was associated with higher risk of death and may be a useful tool in prognostic evaluation of SSc. PubMed, Clin Rheumatol, 10/10/2017. (Also see Diagnosis of Scleroderma Pulmonary Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. Scleroderma and Sjogrens

    Hi Luwana, Welcome to these forums! I'm sorry to hear that you've been diagnosed with Sjogren's and scleroderma. Thankfully, I don't suffer with Sjogren's (and I'm hoping that pleasure will be indefinitely postponed), although I have been diagnosed with limited scleroderma for the last eight years. I'm still going strong, though!! We certainly do have other members, who are suffering with both conditions and some of them may be along to support you. We do suggest that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise. Kind regards,
  16. New to Morphea

    Hi Becs, Welcome to these forums! I'm sorry to hear that you've been diagnosed with Morphea which is a type of localised scleroderma. A 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non-skin symptom, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non-skin symptoms and none of the people in the study developed systemic scleroderma during follow up. Morphea can burn itself out after 3 to 5 years, even without treatment. There are various Treatments for Morphea. The current recommended first line treatment, in most cases, is UVA1 Phototherapy. We do recommend that our members consult a listed scleroderma/dermatologist, as this disease does require specialist knowledge and expertise. Kind regards,
  17. In 2009 I was diagnosed with Sjogrens. Now in 2017 I am diagnosed with Scleroderma. Anyone out there been diagnosed with these?
  18. New to Morphea

    Hi everyone, I got my letter yesterday confirming Morphea. The letter from my dermatologist said it is reversible and not dangerous. My history is I started with an itchy patch of skin about 4inch long to the right and below my belly button in July 2017 (doc thought it was shingles) it spread to the other side the up to just under my ribs on the right side and a bit lower on the left. and I was referred to dermatolog. By the time I had my punch biopsy I had a tiny area (2inch) on the left near my ribs. No scarring or pigmentation thickening has been left behind. Which makes me question if it truly is morphea. Note, I was diagnosed with Celiac in December 2016. Is it possible to burn out this fast and leave nothing behind?
  19. Earlier
  20. Breast Cancer Awareness: Death rates decline. The American Cancer Society reported earlier this month that breast cancer death rates declined almost 40 percent between 1989 and 2015 and the reduction is attributed to screening and early detection by self–exams, mammography and improvements in treatments over the recent decades. Washington Times, 10/20/2017. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  21. Activating and inhibitory receptors on natural killer cells in patients with systemic lupus erythematosis (SLE)–regulation with interleukin-15. Natural killer (NK) cells may play an important role in the pathogenesis of SLE. PubMed, PLoS One, 2017 Oct 12;12(10):e0186223. (Also see Causes of Lupus and Natural Killer Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. Would you like to help scientists find a cure for scleroderma? Dozens of clinical trials for scleroderma and pulmonary hypertension are actively recruiting now. Review them and be sure to ask your scleroderma expert about the ones you are interested in. (Also see Current Clinical Trials and Scleroderma Experts) Posted 11/09/2017.
  23. Hepatobiliary involvement (HBI) in systemic sclerosis (SSc) and the cutaneous subsets. Characteristics and survival of patients from the spanish rescle registry. Primary biliary cholangitis is the main cause of HBI and patients with SSc–HBI exhibited specific clinical and immunologic profile. Seminars in Arthritis and Rheumatism, 10/12/2017. (Also see Liver and Spleen Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. Migraines are more than just a bad headache. While there is as yet no “cure” for migraines, doctors agree that medical research has come a long way in the areas of prevention and treatment, looking at lifestyles, eating and sleeping and related triggers. Washington Times, 10/16/2017. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  25. Did you know you can help raise scleroderma awareness? The nonprofit International Scleroderma Network offers scleroderma awareness bracelets! Bracelets for just $2.50 each with free shipping and handling! They say "scleroderma" on one side and "sclero.org" on the other. (Also see Get Scleroderma Awareness Bracelets) Posted 11/07/2017.
  26. Upper Endoscopy/Colonoscopy

    Hi Clementine ;) Nice to see you post. I see you already received an answer, but my experience is there really aren't any rules when it comes to a lot of the testings we receive. It truly depends on you, your symptoms, and your providers preferences. My motto is unless it's absolutely necessary, I give it a pass.
  27. Association between anti–citrullinated fibrinogen antibodies and coronary artery disease (CAD) in rheumatoid arthritis (RA). Anti–cit–fibrinogen antibodies as a group were associated with CAD outcomes in our RA cohort, with the strongest signal for association arising from a subset of the autoantibodies. PubMed, Arthritis Care Res (Hoboken), 10/08/2017. (Also see Diagnosis of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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