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Found 7 results

  1. Greetings!

    Hi everyone, it's time for my biennial check-in. I do these for newer members who are learning to cope with a frightening diagnosis. Let's see, it's been 11 years since I landed at the Center of Excellence where I was diagnosed with systemic sclerosis sine scleroderma (also called limited), pulmonary hypertension, and interstitial lung disease. So how am I after a decade plus of SSc? Great! I've developed supra ventricular tachycardia, had scary few months when my bone marrow was producing very few white blood cells and neutrophils, and the GI issues have all progressed, but on the whole I'd say I'm fantastic. I need more O2 when I go hiking, but bear in mind I live at 5384'/1614m and hike much higher than that. We still travel, although flying with a portable O2 concentrator requires lots of extra time at security and the boarding gate as well as needing to be scrupulous about the airline's paperwork (beware codeshares!). Unfortunately, I still do all my own housework, gardening, firewood lugging, and shopping~ Lest I sound like a Pollyanna, no, it's not always easy and some days it's just plain hard. I'm grateful to my doctors and grateful that I've reached 70 in such good shape. I'd like my fellow scleroderma patients to know that it is possible to enjoy life despite this disease. If I had to give advice, I'd say never sit down and always choose the healthy option. Oh yeah, and don't be afraid to argue with your doctors, your relationship needs to be a partnership. I hope you all are still shining examples of courage and compassion. Fondly, Jeannie McClelland
  2. The International Scleroderma Network thanks Gilead for sponsorship support to tackle scleroderma and pulmonary hypertension from 2011 to present. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Factors relating to impaired stroke volume during the 6–minute walk test in patients with systemic sclerosis. Impaired stroke volume in patients with systemic sclerosis was observed at rest and during exercise, and the factors relating to the cardiac response seemed to be pulmonary function and the extent of pulmonary hypertension. PubMed, Clin Exp Rheumatol, 07/22/2016. (Also see Pulmonary Hypertension Diagnosis and 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.
  4. The role of asymmetric dimethylarginine (ADMA) alone and in combination with N–terminal pro–B–type natriuretic peptide as a screening biomarker for systemic sclerosis–related pulmonary arterial hypertension (SSc–PAH): A case control study. In this small study, use of ADMA in combination with NT–proBNP produced excellent sensitivity and specificity for the non–invasive identification of SSc–PAH. PubMed, Clin Exp Rheumatol, 05/23/2016. (Also see Prognosis of Pulmonary Hypertension in Systemic Sclerosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Survival protection by bodyweight in isolated scleroderma–related pulmonary artery hypertension. The results suggest body mass index decline should be contrasted, lung diffusion is useful for screening and with stroke volume index and mixed venous saturation for assessing prognosis and treatment. PubMed, Intern Emerg Med, 04/06/2016. (Also see Pulmonary Hypertension Prognosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Has anyone used Revatio for PAH and if so did you experience side effects? I am having headaches and sleepiness which are counterproductive to say the least. Did the side effects decrease with time? Thanks, Lynne CREST with PAH
  7. The International Scleroderma Network thanks Actelion Pharmaceuticals US, Inc. for their sponsorship support, from 2006 to present. (Also see: What is Scleroderma? and What is Pulmonary Arterial Hypertension?) 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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