“I choose to #SayScleroderma because the initial isolation and despair I felt upon diagnosis is something I want others to avoid,” Ronna B. (dx 2022) says. This Scleroderma Awareness Month, join community members like Ronna to #SayScleroderma, and shine a light on this complex and often unknown disease.
After signing up for a race called Samson’s Revenge in Estes Park, Colorado, Ronna decided that she wanted to find a way to dedicate this effort toward promoting scleroderma awareness. “This was my most ambitious race to date, and I decided to collect names of those who are dealing with chronic illness, especially scleroderma, so I could have this community to going to carry with me as I attempted the race,” she says.
While the race began as a test of physical endurance, Ronda also used this as a reminder of her own personal resilience. “I wanted to challenge myself as an athlete and as a patient, but mostly I wanted to remind other patients that we are not alone in our daily disease management,” Ronna says. “As the race became tougher, I thought of my friends who I have been fortunate to connect with and found inspiration to keep going because of our shared experience.”
Through all of her struggles with scleroderma, Ronna is focused on supporting research. “My hope for research and the future is that we come to a day when newly diagnosed patients get the news that they can start treatment for a cure immediately,” she says. “I want to see a day when patients are told they have long life expectancy despite rare disease becoming part of their lives.”
These days, she is passionate about spreading scleroderma awareness, and is active on social media, where she shares the day to day reality of living with this complex disease. “Sharing my story gives others the opportunity to see they’re not alone and we can do hard things,” she says. “I was honored to carry the names of individuals with me as I slowly climbed mountains and jogged by rivers.”
Thank you, Ronna, for sharing your story and for all you do to uplift the scleroderma community. This Scleroderma Awareness Month, you can share your story too. Join us to #SayScleroderma, so that no one has to suffer from this disease alone.
