Since 2008, February has been Rare Disease Month. A time to highlight the unique challenges faced by young people with a rare disease, typically a disease that affects fewer than two hundred thousand patients across the country, as well as bring attention to the research being done to treat these diseases.
We talked to Laura, a young person who knows the difficulties faced by rare disease patients.
Laura had recently been diagnosed with Classical-like Ehlers-Danlos Syndrome when they were told about Next Step, and encouraged to attend a 40day Next Step residential Campference in 2017. They didn’t know it, but Next Step was exactly what they were missing: community. That first Campference was where Laura found connection with other young people, who like them, lived with a rare disease, and had experienced the stigma, isolation, and unique challenges a serious medical diagnosis can cause.
Through working with Kimberly, Next Step’s music therapist, Laura was able to find their voice and share their experiences of living with a rare disease. They were able to talk about the sense of loneliness they felt and the journey to finally get a diagnosis. The problem with a rare disease, is that it’s rare. There’s no telling how many doctors you need to see to finally get a diagnosis. Then there’s the intense difficulty of making sure your insurance covers the care you need. Through our programs, workshops, and studio projects, Next Step helped Laura find their voice and build the confidence needed to become a powerful advocate for the rare disease community.
“In the studio with Kimberly, I was trying to figure out how I could use my story and my voice to make a difference for the rare disease community at large. This led me to discover legislative advocacy through the Young Adult Rare Representatives (YARR) at the EveryLife Foundation for Rare Diseases.”
Laura recently started working at the EveryLife Foundation for Rare Diseases where they manage the YARR program. They work with other young adults in the rare disease community to grow and strengthen their advocacy skills and ensure that young adults have a growing and diverse impact on public policy in the rare space.
In the summer of 2023, Laura and a group of their Next Step peers were joined by Kendall Square Orchestra on stage at Boston Symphony Hall to perform, ‘Come and Walk a Mile’, a Next Step original song that depicts some of the hardships that come with walking a mile with a chronic illness.
With ‘Come and Walk a Mile’, Next Step’s young people wanted to send a message of hope and grit to one person, somewhere in the world, that was struggling with their “mile” while living with a chronic illness. Mission accomplished, and then some!
Watch Next Step peform at Boston Symphony Hall
