About this community
The National Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the National Scleroderma Foundation, an Inspire trusted partner.
Disclaimer
The National Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies referenced in this website. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader's physician(s) for proper evaluation and treatment.
Contact
300 Rosewood Drive
Suite 105
Danvers, MA 01923
Phone: (800) 722-HOPE
Fax: (978) 463-5809
www.scleroderma.org
Community Leaders
Has anyone tried tyvaso and if so how do you feel? Did you feel better?
I was diagnosed with SS in 2022. I'm coming off of a frustrating visit with a pulmonologist who was less than thrilled that my rheumatologist re-prescribed cellcept after he removed the prescription ... Show more
Effective communication with your health care team is a critical component to successful diagnosis and treatment. But what should you do when you feel you're not being heard or understood — or worse, ... Show more
Moving to the Glasgow, Scotland and and need to find a good Scleroderma specialist. I have diffuse scleroderma and currently have a great consultant but need to move country. Would prefer Glasgow bu ... Show more
I have an appointment scheduled in June to see Dr. Fernando Torres at UTSW for evaluation of PAH. Has anyone been to him? I knew someone along time ago that had PAH and saw him. Just wondering. T ... Show more
Due to Esophagus issues due to Crest, I cannot keep down the prep to clean me out so dr. can do a colonoscopy. Now I am at risk since I am high risk with polyps. I throw any and all prep up. anyon ... Show more
This piece was sent to Pastor Carnes by a member of the devotional family. “The Bummer Lamb” What happens to a little lamb that is rejected by its mother? It will hang its head so low it loo ... Show more
Are You Anxious To Meet People Here? Sure you are, so let's do this! We know…new people come to Inspire and they don’t know where to start, or what to do, so I am here to tell you….JUST JUMP RIGHT ... Show more
Hi! I'm new here and looking for some advice. I recently had a positive ANA (titer 1:1280 with a nuclear, centromere pattern) and a positive centromere b antibody (greater than 8) both done thro ... Show more
I’m hoping to find a doctor in the Lehigh Valley Area of Bethlehem,PA who is a Systemic Scleroderma Specialist. Is there anyone who can help me?