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  1. Yesterday
  2. More Pets, Fewer Allergies. Children who live with cats and dogs when they are infants are less likely to develop allergies later in childhood. New York Times, 12/19/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 01/16/2019.
  4. Last week
  5. Diastolic dysfunction (DD) in rheumatoid arthritis (RA) patients with low disease activity. The prevalence of DD as expressed by E/A ratio in RA patients with continued low disease activity was not different from that of controls. PubMed, Clin Rheumatol, 12/12/2018. (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.
  6. Prevalence and Clinical Associations of Antiphospholipid Antibodies (aPL) in Systemic Sclerosis (SSc): New Data From a French Cross–Sectional Study, Systematic Review, and Meta–Analysis. In our SSc population, aPL positivity was associated with venous thrombosis and miscarriage and these data provide additional insights into the role of aPL in the vasculopathy observed in SSc. PubMed, Front Immunol, 2018 Nov 2;9:2457. (Also see Antiphospholipid Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 01/14/2019.
  8. Rise in reports of polio–like illness being investigated. An increase in reported cases of a rare polio–like illness that mostly affects children is being investigated by Public Health England. BBC Health News, 12/19/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. The effect of statin use on mortality in systemic autoimmune rheumatic diseases (SARD). In this study, statin initiation was shown to reduce overall mortality in patients with SARD after adjusting for relevant determinates of cardiovascular disease risk. PubMed, J Rheumatol, 2018 Dec;45(12):1689-1695. (Also see Statins) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. Joelf

    Breast feeding and Scleroderma

    Hi Blair, Welcome to these forums! I'm sorry to hear that your daughter has been diagnosed with en coup de sabre and send my best wishes to you. Regarding silicone breast implants, contradictory findings continue to plague research into this area. I've included a link to our medical page Causes of Scleroderma: Artificial Joints and Silicone Breast Implants, which may be helpful to you. Kind regards,
  11. Case Report: Complete heart block (CHB) in systemic sclerosis (SSc). Pacemaker implantation might be unavoidable if CHB is secondary to SSc, even if it is asymptomatic. PubMed, Medicine (Baltimore), 2018 Nov;97(46):e13226. (Also see Complications with Heart Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. My name is Blair. In June of 2018 my daughter, who was seven years old at the time, was diagnosed with En coup de Sabre and has been on treatment since. Upon doing my own research, I have found that there is a possible link between silicone breast implants and auto immune diseases such as Scleroderma. I am wondering now because I have silicone breast implants and breast fed my daughter when she was a baby if there is any sort of connection between the two. Just reaching out to see if anyone else has this situation.
  13. Joelf

    Blood Results and Worried!

    Hi Norma, Welcome to these forums! I'm sorry to hear that you're suffering with Raynaud's and Hashimoto's Thyroiditis and are feeling a little anxious about your blood test results. We do have quite a few warming tips on the Raynaud's link I've included, which I hope you'll find helpful and interesting. Please do let us know how you get on at your doctor's appointment in two weeks. Kind regards,
  14. Norma S

    Blood Results and Worried!

    Hello Phyllis, I am new to this forum( hello everyone). Phyllis, interestingly enough I just got my blood results back and I have the same results you do and suffering also from the Raynaud's. I was diagnosed with Hashimoto’s Thyroid back in August 2018. I am going to little crazy since reviewing the results and will not get an official diagnosis until I discuss it with my doctor that I see in two weeks. Let’s see what happens. Right now the Rayaud's is pretty bad, up to 25 bouts a day. Have to wear gloves to work because it’s not just the cold but the stress the fingers (typing , holding something, squeezing etc).
  15. The language of diabetes harms sufferers – it’s time for change. People living with diabetes can be left bewildered by a blame narrative encouraged by the media, and even by the medical profession. Independent, 12/11/2018. (Also see Diabetes) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. 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 01/09/2019.
  17. Earlier
  18. The relationship between type 1 IFN and vasculopathy in anti-MDA5 antibody–positive dermatomyositis (DM) patients. The high T1-IFN signatures of the MDA5 antibody–positive DM patients in serum and deep vasculatures suggested that T1-IFN may have important roles in the vasculopathy of these patients. PubMed, Rheumatology (Oxford), 12/11/2018. (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.
  19. Katlove007

    Unable to get a referral to a rheumatologist

    Thank you for your response. Unfortunately at this time finances limit me from going elsewhere maybe at a later date I’ll be able to see a specialist. This form has really helped with my anxiety and fear about my blood work and hopefully it does not progress for me.
  20. dimarzio

    En coup de sabre? (ECDS)

    Hi Chris, From my knowledge and experience, I would indeed think that these issues are linked. I am however pleased that you have had a formal diagnosis and appropriate treatment. Many of us have waited a long time for that. I hope that you are receiving an appropriate treatment for Barrett's Oesophagus, e.g. a Proton Pump Inhibitor. That does need to be kept under strict control. I wish you all the best and hope that the Methotrexate helps. Please do keep in touch to let us know how things progress (or hopefully symptoms don't progress). Dimarzio
  21. Exploring Novel Treatment for Scleroderma–Associated Interstitial Lung Disease. This study is one of three major multicenter trials in which Cleveland Clinic’s Rheumatic Lung Disease Program is participating. Consult QD, 12/13/2018. (Also see Treatments for Pulmonary Fibrosis and Clinical Trials) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles
  22. 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 01/07/2019.
  23. Hi MomZ. Sexual disfunction can be a side effect of a number of medications and/or combinations. This might be a possibility in your Son's case, though could equally be arising from the illness itself of course. Good luck in getting the right diagnosis and treatment
  24. Why snacking could be disrupting your immune system. We're eating more frequently than ever before – and it could be damaging our health in unexpected ways. Independent, 12/18/2018. (Also see The Human Immune System) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles
  25. Hi Katlove, Welcome to these forums! I'm sorry to hear that you're having problems getting an appointment with a rheumatologist. We do recommend that our members, if possible, consult a listed scleroderma expert, rather than a common or garden rheumatologist, as a complicated disease such as scleroderma does require specialist knowledge in order to deal with it correctly. It may be necessary for you to travel out of state in order to obtain an appointment with one. Having said that, I'm afraid that very often the scleroderma expert/rheumatologist does recommend a policy of "wait and see", until further symptoms manifest themselves or not, as the case may be. I know this can be extremely frustrating, but unfortunately scleroderma is notoriously difficult to diagnose, especially in the early stages. For more information about your blood test results, please see our sticky. Kind regards,
  26. Thank you for your replies! He recently told me he was having a form of sexual dysfunction that is not very common in teenage boys, I guess this can be due to the lung disease but I also read it is a symptom of Sclerosis. We have a referral to a pediatric rheumatologist on the 17th. We are also still waiting to hear back from the pulmonologist about his poor lung function and a plan. He is not gaining weight and seems to have stopped growing. Likely due to the extreme energy his body is expending compensating for his poor lung function. I have done so much reading on the research available trying to match his symptoms up. While Ehlers-Danlos is still not ruled out this just seems to fit more. I appreciate your advice and would be interested in any one else's experience with the type of sclerosis with minimal skin manifestations. Thank you!
  27. I have just recently received blood results of ANA 1:40(neg) and anti-scleroderma 2.4. No one in my area is taking any new patients and I was told that because of the low ANA and all other blood work was okay that I’m in the wait and see category. I would love to be able just to sit down and talk to a specialist, but for now I’m told I need no referral. I'm wondering if anybody else is ever been in the situation and how they proceed.
  28. The Effect of Pregnancy on Disease Activity in Patients with Psoriatic Arthritis. Continuation of biologics therapy was associated with a low level of disease activity and a low probability of flare during pregnancy. PubMed, J Rheumatol, 2018 Dec;45(12):1651-1655. (Also see Psoriasis and Psoriatic Arthritis and Biologic Agents) 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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