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Scleroderma Hotline and Email Support Specialists are eager to help people affected by scleroderma and related illnesses, such as pulmonary hypertension. Simply email [email protected] or call our Hotline at 1-800-564-7099. Ask for your free information packet! Posted 06/26/2017. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
Hi. My name is Mike. I am 42 married with a 13 month old son. I am a carpenter and have always been in good physical condition. I have recently been diagnosed with systemic scleroderma. Most symptoms are soft but I have fibrotic NSIP and it has become very aggressive. Within the last 1.5years I am down to 45% lung capacity. We are Canadian and have some similar treatment options. Prednisone hasn't worked. They are now mixing another drug with it. ( we're hoping for some good news ) I am no longer able to work and have been prescribed oxygen. We have been looking into stemcell transplant at northwestern university in Chicago. This isn't an option in Canada and is a very expensive procedure. Soon I may have no option other than transplant. Hoping for any opinions or suggestions. Even just to hear from others in the same situation may help. Mike.