“I was diagnosed with scleroderma at 17 years old, which means I’ve lived more than half my life navigating this disease,” Kim (dx 2003) says. Her journey began at a time when little was known about scleroderma and information was harder to come by, and for many years, it was an isolating experience, as she and her mother tried to make sense of her symptoms without answers.
“My mother and I went to nearly every doctor in my hometown, but we went years without a diagnosis,” she says. After researching on their own, they even asked about scleroderma, only to be told not to worry. It wasn’t until Kim moved to Seattle that she finally received an official diagnosis, along with several related conditions, including Raynaud’s, Sjögren’s syndrome, gastroparesis, Ehlers-Danlos syndrome, arthritis, and more.
For Kim, dealing with Raynaud’s became part of her everyday routine. “With Raynaud’s, you get to know your body very well, very quickly. You learn what can trigger a flare-up, and how to avoid it,” she says. “Find the tools that work for you. I use hand-warmers and gloves almost daily, even when I am not having a flare-up.”
For Kim, staying active is also crucial for her overall health. “I have always lived by the mantra of ‘Just keep moving’. “Movement may not always be easy, and may be painful, but keeping yourself moving does so much mentally, emotionally, and absolutely physically,” she explains. “I do yoga, mindful stretching, and some lifting to keep my muscles strong.”
“Scleroderma is an ever-changing disease, and early on, every day felt unknown,” Kim says. Like many people living with scleroderma, she learned quickly that the disease can be unpredictable, affecting daily tasks and quality of life in ways others may not always see.
“As social media and technology advanced, it helped connect people like me with others who understand,” she says. Those connections, along with access to specialists and growing advocacy efforts, made a meaningful difference. “Knowing that we have people that are supporting us and helping us find a cure, such as the Scleroderma Research Foundation, keeps us going,” she says.
“Raynaud’s can definitely take a toll on you, but know that is a condition that is absolutely livable,” Kim says. “You are not alone in your journey, and you can have a beautiful, full, impactful life with scleroderma and Raynaud’s.”
“I hope my story helps others lead with compassion, kindness, and humor, and reminds them that there is support and hope,” Kim says. Thank you, Kim, for sharing your story and helping spread awareness around scleroderma and Raynaud’s.
This month, take action for a chance to win in our special Raynaud’s Awareness giveaway. Learn more and get involved at the link below!
