No two journeys are the same. Read the stories of various members of our community below to learn how the National Scleroderma Foundation helped each of them find their best path.
“I’m still adjusting. Sometimes, I’m good for a week but then something else starts going on that’s weird. Sometimes, it hits me and I think ‘Huh…there is a ridiculously low chance I’ll hit 40.’”
“The National Scleroderma Foundation has been nothing but wonderful to me. They have opened their arms, provided me with information, support, education. I cannot thank them enough and I think that my journey is just beginning now that I know what journey I’m on.”
“Kids have to grow up really fast when they have scleroderma. My husband and I try to teach Grace that she needs to learn how talk about her own symptoms and treatments clearly and how to administer most of her medicines by herself. We tell her that scleroderma should not define her or hold her back—that she can be all that she can be.”
“The hard thing about Scleroderma is that every person has different symptoms, a different progression, a different experience–But everyone can turn to the National Scleroderma Foundation as a resource and support.”
“The National Scleroderma Foundation is a great resource whether it’s online or actually providing people to connect with. The staff is personable—I could talk forever with them about scleroderma but about anything else, too, and can help you navigate your diagnosis.”
“I am so honored to have the opportunity to work alongside the National Scleroderma Foundation to bring awareness to this disease. I never thought when I was diagnosed at 5 years old, that I’d one day get the opportunity to bring support and community to others that I did not have. I’m very excited for the future and what is to come.”
“I feel fortunate to have received support from the National Scleroderma Foundation. It is a wonderful, kind, encouraging, and collaborative community. I am grateful for the Foundation as they helped springboard not only my research but also my career.” Read Dr. Montesi’s Story
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