“I looked down at my fingers, and they almost looked black,” remembers Jane J. (dx 2008). “I couldn’t lift anything without pain in my wrists.” Test after test came back with nothing, until a hand surgeon treating her for carpal tunnel decided to refer her to a rheumatologist.
“Eventually, I was diagnosed with systemic sclerosis. My doctor told me, ‘Scleroderma got aggressive with you, so we’re going to get aggressive with it,'” she recalls. “It’s so important to build a healthcare team with physicians who want to help you fight.”
Jane decided that she didn’t want to navigate scleroderma alone. “Finding patient support is so important,” she says. “It was at a conference where I was first surrounded by people who understood what I was experiencing. It was so helpful for me to find community with others who have this disease.”
That sense of community became a source of strength as she faced the harder days ahead. “We all are so much stronger than we know. In the end you have a choice: you can laugh, or you can cry,” Jane says. “I try to choose to laugh as often as I can.”
“If you’re at the beginning of your journey, do not give up. Even if you’re further along your journey, do not give up,” she advises. “Take good notes and keep good records. Be your own advocate. And if you’re not up to that task, then find a family member or friend who is on your behalf.”
These days, Jane is proud to #SayScleroderma. “For years, I have co-spearheaded local walk/runs to raise awareness and funding for research,” she describes. “This new line of SRF merchandise has given me another way to spread the word.”
Throughout it all, Jane has remained a devoted supporter of research. “Research in the pursuit of finding a cure is the path forward. While there isn’t a cure for it yet, there are plenty of things that can be done,” she says. “It takes funding in this world to support the bright minds who will ultimately figure this out.”
We’re grateful to Jane for sharing her story. You can join her in wearing your support on your sleeve. Score some gear at the SRF Merch Shop, linked below.
