“I really felt like the 10 year mark was a celebration of how far I have come and wanted to do something to celebrate that,” says Anna K. (dx. 2016). “I know I would not have made it to 10 years without the role of research, so raising money for SRF seemed like the perfect way to celebrate and give back.”
To spread the word about her event, Anna turned to the people closest to her first. “I made a Facebook group and created both paper and digital flyers and shared them with friends and family,” she says. “I used a lot of social media to share my story, which helped people see it and be curious about donating. My event was mostly for friends and family but other people joined in as well.”
She advises others to consider hosting a fundraiser to mark the moments that are important to them. “A personal milestone or an anniversary is a great way to fundraise around because it is something people can celebrate with you and it gives you a chance to share your story in a unique way,” Anna says. “I am pretty open about my journey, but it allowed me to continue to be open and share about my successes in the last 10 years while sharing why fundraising is so important. I often share with others that without the research SRF funds, my journey to the 10 year mark would have been much more difficult, so their donation really does matter.”
Anna’s own path to diagnosis moved quickly, which is something she knows is rare. “My first symptoms were GERD and arthritis like tightness in my hands. I honestly didn’t know what it was at first and brushed it off for a while,” she explains. “When I could no longer make a fist out of my hands, I knew something was wrong.” A visit to her primary care doctor led to a rheumatology appointment, and a diagnosis of scleroderma soon followed, which was later confirmed by an antibody test.
Diagnosed at age 26, Anna made a decision early on. “I was really determined to not let scleroderma take over my life. I have learned that I am stronger than I often give myself credit for and am far more capable of things than I think,” she says.
In the ten years since, she has climbed a 14,000-foot mountain, traveled to Europe three times, and attended an Olympics. “Scleroderma can be hard to manage at times but I am not going to let it slow me down!” she says.
We are so grateful to Anna for sharing her story and fundraising to support scleroderma research. Inspired by her efforts? You can fundraise for the SRF too. Learn more below.
