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  1. Today
  2. Cardiac magnetic resonance (CMR) in systemic sclerosis patients with cardiac symptoms. Myocardial involvement in systemic sclerosis can be assumed by the presence of multiple pathologic MRI findings and CMR seems to be a valuable tool to identify and assess the presence of cardiac involvement. PubMed, Eur Rev Med Pharmacol Sci, 2017 Nov;21(21):4797-4803. (Also see Diagnosis of Scleroderma Heart Involvement) 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 Pam Hopp for tackling scleroderma research, support, education and awareness! (Also see Sclero Shop/Donate) Posted 01/16/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. Jo Frowde: ISN Board of Directors

    Thank you very much, Sweet.
  5. Yesterday
  6. Heredity in scleroderma

    Hi Tazzie, I'm sorry to hear about your daughters diagnosis. Jo gave you a few good links, I hope you find them helpful. She also gave very good advice. Thank you for posting, and please give my best to your daughter and you!
  7. Jo Frowde: ISN Board of Directors

    Congrats Jo! You're a rock star! Thank you for all that you do.
  8. This is so true, and so often it happens at night. In all my years nursing, you'd be surprised how many people presented to the ER thinking they were having heart attacks, but really it was a panic attack/anxiety. It can be frightening.
  9. Shortness of breath, racing heart or tremors could be a sign of anxiety. It’s not unusual for anxiety to be expressed physically rather than emotionally, which can make it difficult for doctors to make the right diagnosis since anxiety can produce a wide variety of symptoms. Today Health News, 12/13/2017. (Also see Anxiety and Attitude) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 01/14/2018.
  11. Jo Frowde: ISN Board of Directors

    Thanks so much, Quiltfairy.
  12. Jo Frowde: ISN Board of Directors

    I am so happy for you.
  13. Last week
  14. Mouth bacteria linked to esophageal cancer. An analysis of microbes sampled from the mouths of more than 120,000 people has found that two types of bacteria that lead to gum disease are also linked to higher risk of esophageal cancer. Medical News Today, 12/01/2017. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. The International Scleroderma Network thanks Giving Assistant for their generous donation to tackle scleroderma research, support, education and awareness! Posted 01/13/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. Hi Ana, Welcome to these forums! I'm sorry to hear that you're suffering with unpleasant gastrointestinal symptoms and although they can be a fairly common symptom of scleroderma, they can equally be symptomatic of many other health issues as well. I can understand that you're feeling concerned about your blood test results; although they do have some relevance in the diagnosis of scleroderma, they are only a very small part. This is because it is perfectly possible to have positive antibodies and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. Far more important are the clinical signs and symptoms of the disease, which is possibly why your rheumatologist is reluctant to diagnose you at this stage. Unfortunately, the nature of scleroderma is such that it makes diagnosing the disease very difficult (I believe the average time it takes for a sufferer to be diagnosed is six years) so you are certainly not alone in not receiving a quick or complete diagnosis. I've included a link to our medical page on Gastrointestinal Involvement, which I hope you'll find helpful and informative. We do recommend that our members consult a listed scleroderma expert; as many rheumatologists may only see a couple of cases of scleroderma in their lifetime, it does require specialist knowledge and expertise in order to deal with all it's little foibles and idiosyncrasies. Kind regards,
  17. I’ve had 2 ANA test come out positive for centromere pattern associated with limited systemic sclerosis. My problems are mainly gastrointestinal. Bloating, gases, slow digestion and abdominal pain. I feel pressure inside my stomach and abdomen. I also feel stiffness in neck and back. Rheumatologist has not diagnosed me due to no CREST signs. Never have seen signs of Raynaud's. I am very concerned. I know this disease can manifest itself differently in people. Can anyone who is suffering from this condition and is having gastrointestinal issues give me some insight regarding symptoms?
  18. Jo Frowde: ISN Board of Directors

    Thank you so much for your kind words, Margaret. It’s such a pleasure to have met you, Gareth and your lovely family and be able to give some encouragement and support to you and all our members. Best wishes,
  19. Jo Frowde: ISN Board of Directors

    Congratulations, Lady!!! You've done so much for all of us!!! Margaret
  20. Physical activity (PA) in patients with systemic sclerosis (SSc). In SSc patients, the total minutes of PA per week are significantly lower compared to the general population. PubMed, Rheumatol Int, 11/18/2017. (Also see Coping Strategies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  21. We heartily thank Winifred Schillberg for her donation to tackle scleroderma, in honor of Kim Thwaits. Posted 01/12/2018.
  22. These 4 changes in your facial skin could signal a serious medical condition. The dark circles around your eyes or nagging acne on your face may be telling you more about your health than you think. Today Health News, 12/09/2017. (Also see Systemic Autoimmune Rheumatic Diseases) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. We heartily thank Arnold Slotkin for his donation to tackle scleroderma, in loving memory of Marta Marx. Posted 01/11/2018.
  24. Jo Frowde: ISN Board of Directors

    Thank you so much, Shelley; I'm so pleased to be able to join the Board of Directors and am looking forward to the new challenges that it will bring. This is the upside of having scleroderma; without having that I would never joined the ISN (which was one of my better decisions and has enriched my life ) and never progressed past sending the odd email (I was a complete Luddite!) I've met such fantastic people through our members and friends. I'm joining the Sclero Happy Dance!!
  25. Jo Frowde: ISN Board of Directors

    Jo, we are very excited to have you join the ISN Board of Directors! As many of you here know, Jo has been an ISN volunteer since 2010. She has steadily expanded her roles within our organization, as she is always eager to tackle new challenges. We are thrilled with the expertise she will bring to the board, including vast knowledge of ISN processes, policies, and procedures that enable us to tackle scleroderma on all fronts. I'm throwing a Sclero Happy Dance to celebrate!
  26. On January 11, 2018, Jo Frowde accepted the invitation to join the ISN Board of Directors. Jo is also ISN Assistant Webmaster, ISN Sclero Forums Manager, and ISN News Director. Posted 01/11/2018. (Also see ISN: Jo Frowde and How to Volunteer)
  27. Our Thanks to Margaret Roof!

    LOL.....I'd be a total basket case without you guys!!! Money well spent and cheaper than a therapist!!! Take care, everyone, Margaret Mom to Gareth, 29 years old, DS/ASD
  28. Multiple Sclerosis (MS): Blood test offers new way to monitor disease activity. Monitoring disease activity in individuals with MS, might be done with a simple blood test that measures levels of a nerve protein, according to a new study from Norway. Medical News Today, 11/30/2017. (Also see Multiple Sclerosis) 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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