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I'm New to the Site, but have had scleroderma for 20 years.

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#1 nikpik



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Posted 24 January 2010 - 04:51 PM


I have had lupus and scleroderma and Raynaud's and CREST and pulmonary fibrosis and now I've been hit with pulmonary hypertension. I started Remodulin sub-q last month. I've been off of work since then.

I'm looking to join a support group, or find friends, or anything to help me through this.

I am 37 years old, been happily married for 11 years, have a daughter who is nine, and a son who is 7. I am a bank officer at a small community bank, and manage the bookkeeping dept. I love my job. I intend to go back.


#2 miocean


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Posted 25 January 2010 - 05:29 AM

You have found a great place to come for support and answers. It is reassuring to hear that you have had scleroderma for 20 years. I have diffuse scleroderma and have had it for five years. It is not aLways easy to deal with so I admire your determination.

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#3 janey


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Posted 25 January 2010 - 07:07 AM

Hello Nikpik (Love the name!)
Welcome to the Sclero Forums. WOW - 20 years - yes, that is reassuring to all of us here! I'm sure you have a lot to offer. Hopefully, we can help you out as well.

I'm sorry to read about your recent diagnosis of Pulmonary Hypertension (PH). I was diagnosed with PH fall of 2006 and was started on Bosentan immediately. My PA pressure dropped back into the 20's (basically normal) within a year. I started at a pressure of 45 which isn't that high comparatively. My O2 levels still drop when I exercise or exert myself too much, so I do use oxygen for those activities. Otherwise, the medication and oxygen seem to have allowed me to manage quite well. I'm retired but I have my own home business and work 20 - 25 hours a week in and out of the house (a few meetings with clients here and there). So life does go on even after scleroderma and PAH diagnoses. We do have a section on Coping with Scleroderma. You seem to have done that quite well, but we all need to revisit some ideas for stress management and anxiety reduction once in a while.

Also, there is an organization called Sure Steps that is a support website for pulmonary hypertension patients. I have found the site to be quite helpful. Lots of good information. Please click on the link I provided and check it out. I hope it helps.
Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Sweet


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Posted 26 January 2010 - 10:34 AM

Hello Nikpik,

Welcome! We'll you've found the right place! I'm sorry you have numerous aspects of ill health. Sure makes life a challenge. You'll probably have a lot of great information, and experience to share with us here. I look forward to knowing you better.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)