“I #SayScleroderma because although it is rare and may feel isolating, it is not one to be alone with,” says Ryan M. (dx 2019). “There is a global community that talks about it, researches it, and fights it every day. I see organizations all over the world where the conversations are going strong, and I encourage patients new and old to jump in.”
In early 2019, a hospitalization for pneumonia revealed unusual formations in Ryan’s lungs. “Over that year, I rapidly developed extreme weight loss, GI issues, poor lung function, hand dexterity loss, tight skin on hands and chest, and a hoarse voice,” he describes. After seeking additional testing, he eventually received a diagnosis of scleroderma with myositis overlap.
“I was diagnosed just before the pandemic, so living with scleroderma required immediate and significant lifestyle adjustments,” Ryan explains. “I’ve had to prioritize avoiding illness due to immunosuppression, and have to be avoidant of the cold to minimize flare ups. Remote work and careful diet with exercise are also now important to me.”
Despite these challenges, Ryan has found strength in his scleroderma journey. “I’ve learned my own resilience,” he says. “Despite the initial shock of my diagnosis, I’ve discovered my ability to cope, seek support, thrive in my career and hobbies, and persevere.”
To Ryan, scleroderma research brings hope: hope for better treatments and for fuller lives for those living with scleroderma. “Research is vital because it directly impacts the quality and length of life for everyone who has this condition,” he says.
Thank you, Ryan, for joining us to #SayScleroderma and for sharing your story. This Scleroderma Awareness Month, we invite you to take part in shining a light on this disease, supporting those living with scleroderma, and helping accelerate research toward better treatments and a cure.
