“I’m still adjusting. Sometimes, I’m good for a week but then something else starts going on that’s weird. Sometimes, it hits me and I think ‘Huh…there is a ridiculously low chance I’ll hit 40.’”
What began as experiencing weakness in his hands soon evolved into kidney failure for 30-year-old Tom Fry. One year and 40 doctor visits later, Tom was diagnosed with the rarest form of scleroderma, diffuse cutaneous systemic scleroderma with renal failure crisis subset.
At Tom’s wife’s suggestion, he did a Google search to see if there was an organization that helped people with scleroderma. “She was right,” he said. “I was Googling it and then the National Scleroderma Foundation Delaware Valley chapter came up. It was wild because I saw the address and thought ‘Wow, that’s 15 minutes from my house.’”
Though many of Tom’s friends and family members struggle with understanding the disease and its effects, Tom has found a sense of community with the Foundation. Like many others recently diagnosed, Tom began to watch videos on the Foundation’s YouTube channel from past year’s conferences. From there, he was connected to a leader of the Scleroderma Young Adults Needing Connection (SYNC) Group. At that point, he also found the men’s group online and was invited to speak on a mental health panel for young people living with scleroderma. In 2021, Tom was invited to speak at the first-ever virtual National Scleroderma Conference.
Today, Tom enjoys the community he found through the Foundation and continues to raise awareness about scleroderma. He looks forward to continuing the effort and wants to use his voice to spread this inspiring message: “We can make change and miracles can still happen! Let’s keep the hope alive and keep spreading awareness.”