“I never imagined I would be grateful for my diagnosis, but it has helped me understand myself better and given new meaning to my life,” says Nafisa Z. (dx 2020).
Nafisa’s journey with scleroderma began in her teenage years. “I first experienced symptoms of Raynaud’s syndrome around the age of 14 or 15,” she recalls. “It caused my fingertips to become cold and turn blue.”
In 2019, Nafisa faced consecutive infections, significant hair loss, and confusion about her deteriorating condition. After three months, she saw a doctor who conducted tests, leading to a positive ANA test and a referral to a rheumatologist. At last, the doctor gave her a diagnosis: scleroderma.
“Accepting this diagnosis was one of the toughest experiences of my life,” she admits. “I learned to be kind to myself and appreciate what I have.”
Baking had always been therapeutic for her, and she decided to help others by offering gluten-free baked goods. Now, she runs a mini home bakery specializing in gluten-free and allergy-friendly treats.
In June, for Scleroderma Awareness Month, Nafisa held a fundraiser, pledging 25% of all sales to the Scleroderma Research Foundation. This made her part of the SRF’s Cure Crew, a volunteer program dedicated to raising awareness and funds for scleroderma research.
For Nafisa, scleroderma research holds immense significance. “Thanks to the research that was done before, I was lucky to be diagnosed early,” she says. “I hope to contribute to scleroderma research by sharing my story and supporting fundraising efforts.”
We are grateful to Nafisa for sharing her story with us and for her fundraising efforts in support of scleroderma research.
There are so many ways to make an impact with Cure Crew, including hosting events, fundraising, and participating in research.
