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  1. Today
  2. Hi Lynnann, I'm sorry that both you and your sister have had so many health issues. The tests might help determine a cause, such as scleroderma. Plus who knows, your weight loss may also be due to something else, and it would certainly be urgent to treat, regardless of the diagnosis. Please let us know how things go.
  3. Siblings of patients with rheumatoid arthritis (RA) are at increased risk of acute coronary syndrome (ACS). Siblings of patients with RA are at increased risk of ACS, suggesting shared susceptibility between RA and ACS. PubMed, Ann rheumatologist Dis, 02/20/2019. (Also see Symptoms and Complications of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  4. Yesterday
  5. Endothelial lesion and complement activation in patients with Scleroderma Renal Crisis (SRC). It is likely that we will be forced to redefine the SRC concept, focusing on the relationship between acute endothelial damage and complement activation. PubMed, J Bras Nefrol, 02/25/2019. (Also see Kidney (Renal) Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  6. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 04/21/2019.
  7. Last week
  8. A User Manual for Your Knees. A knee is designed to withstand millions of steps during a lifetime, but sometimes all that stress can cause your knees to break down. New York Times, 03/22/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  9. Two subgroups in systemic lupus erythematosus (SLE) with features of antiphospholipid (APS) or Sjögren's syndrome (SS) differ in molecular signatures and treatment perspectives. Stratifying SLE patients based on an autoantibody profile could be a way forward to understand underlying pathophysiology and to improve selection of patients for clinical trials of targeted treatments. PubMed, Arthritis Res Ther, 2019 Feb 18;21(1):62. (Also see Lupus in Overlap, Sjögren's Syndrome and Antiphospholipid Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  10. Case Report: Maxillofacial Implications of Scleroderma and Systemic Sclerosis. We present the case of a 26-year-old female patient with scleroderma who exhibited extreme maxillofacial manifestations of the disease. PubMed, J Oral Maxillofac Surg. (Also see Dental Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  11. Why Lifting Weights Can Be So Potent for Aging Well. People who discovered that they enjoyed and felt capable of completing a weight–training session subsequently joined a new gym and showed up for workouts. New York Times, 03/22/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  12. Monoclonal antibody targeting BDCA2 ameliorates skin lesions in systemic lupus erythematosus (SLE). The data suggest that targeting plasmacytoid DCs may be beneficial for patients with SLE, especially those with cutaneous manifestations. PubMed, J Clin Invest, 2019 Mar 1;129(3):1359-1371. (Also see Antibodies in Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  13.  Pulmonary veno–occlusive disease (PVOD) is highly prevalent in scleroderma (SSc) patients undergoing lung transplantation. Presence of PVOD may be an unrecognised contributor to the dismal prognosis in patients with SSc –pulmonary hypertenson–interstitial lung disease. PubMed, ERJ Open Res, 2019 Feb 11;5(1). (Also see Lung Transplants for Pulmonary Hypertension and Lung Transplants) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  14. 8 Science-Backed Ways to Prevent Heart Attacks, According to New Guidelines. Experts have issued a new set of guidelines on the best ways to prevent first heart attacks, strokes and heart failure – and for the first time, they focus squarely on the patient. Time Healthland, 03/18/2019. (Also see Heart Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 04/16/2019.
  16. Earlier
  17. Prevalence of and factors associated with dysfunctional low back pain in patients with rheumatoid arthritis. Strictly controlling patients' body weight and disease activity with methotrexate and avoiding spinopelvic malalignment through vertebral fracture prevention are important. PubMed, Eur Spine J, 03/08/2019. (Also see Symptoms and Complications of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  18. Evolving insights into the cellular and molecular pathogenesis of fibrosis in systemic sclerosis (SSc). After reviewing the major and emerging cellular and molecular mechanisms underlying SSc, this article looks to identify clinical applications where this new molecular knowledge may allow for targeted treatment and personalized medicine approaches. PubMed, Transl Res, 02/23/2019. (Also see Fibroblasts) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  19. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 04/14/2019.
  20. Thank you so much! I just would love to finally meet an expert, because every doctor I have ever met has never seen a case like mine. I appreciate you taking the time to answer my question. Thanks for the links. I'm so grateful to you.
  21. Giving Your Baby Peanuts Early On May Help Prevent Allergies, New Guidelines Say. Introducing peanuts early may help some babies avoid allergies, according to new guidance from the American Academy of Pediatrics (AAP). Time Healthland, 03/18/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. Galectin-9 and CXCL10 as biomarkers for disease activity in juvenile dermatomyositis (JDM): a longitudinal cohort study and multi–cohort validation. Galectin-9 and CXCL10 were validated as sensitive and reliable biomarkers for disease activity in (J)DM and implementation of these biomarkers into clinical practice might facilitate personalized treatment strategies. PubMed, Arthritis Rheumatol, 03/12/2019. (Also see Dermatomyositis and Polymyositis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles
  23. 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 04/09/2019.
  24. Hi Olimpia, Welcome to Sclero Forums! I'm sorry you have concerns regarding SCL-70. As it happens, about 30% of people with non Hodgkins Lymphoma show a positive ANA, but without it being due to autoimmune disease. The studies about that are over 3 years old, so we won't link to them in the forums, however, you can Google the topic. Perhaps that's it? Or perhaps not. Only your rheumatologist, preferably a scleroderma expert if you are experiencing any symptoms of it, could know for sure. Even then, the illness is diagnosed based on symptoms, not blood work, which is why symptoms rule the day.
  25. TBH, I would be more worried about a diagnosis of non-Hodgkin's lymphoma then I would a diagnosis of scleroderma (neither of which are very nice). When diagnosed, I initially gave up because the anti depression medication I was given for my 'imaginary illness' caused side effects which gave the impression that my limited scleroderma had defused quite quickly. Once I had ditched the anti depressives (which I clearly didn't need), I began to feel more positive and began to take more exercise and built myself back up again. From being barely able to walk 3 years ago, I now walk 3 or 4 km per day, have been tent camping twice, have enjoyed 3 foreign holidays, have been learning to fly paramotors and doing a fair amount of DIY all of which I thought I would never again be able to do at the time. It's been hard work and every day is painful, but I will make the most of life for as long as I can, no matter how much it hurts. I will fight this as long as I can and will not give up until I have to, whether that is in a year, 5 years or 20 years. Positivity and tenacity can go a long way. Don't dwell on the negatives and focus upon what youcan do rather than what you can't. Above all, look after youself well and have as much fun as you can. Best wishes, Dimarzio.
  26. Hello my friend, Remember, one day at a time, otherwise everything can be so overwhelming. I had myself in the grave many times to find out it all wasn't so bad. Easier said than done, but don't worry until there is something to worry about. And even then I find out it wasn't as bad as it was in my mind. :)
  27. Its always frustrating when you feel you are not being heard. The relationship between you and your doctors are oh so important. I've been known to fire mine and move along to one I have better communication with. It's your life, your body and your dime. Remember they work for you. :)
  28. Thank you for taking the time to reply to me. To put my mind at ease (or not), I'm going to make an appointment with my doctor next month. I'm going on vacation this month and I'm trying not to let anything ruin it.
  29. Identification of regulators of the myofibroblast phenotype of primary dermal fibroblasts from early diffuse systemic sclerosis (dSSc) patients. Our results demonstrated the value of carefully–phenotyped SSc dermal fibroblasts as a platform for SSc target and drug discovery. PubMed, Sci Rep, 2019 Mar 14;9(1):4521. (Also see Fibroblasts) 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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