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Finding Purpose after Diagnosis

Dee BurlileDee Burlile may only be 5 foot 2 inches tall but she packs a powerful punch. As a scleroderma patient Dee knows all too well the obstacles that individuals with the disease, and their families face and she’s working with the Scleroderma Foundation to advocate for change.

Like many scleroderma patients, Dee suffered for years with painful symptoms and no diagnosis.

“When I first discovered I had scleroderma, I felt a bittersweet sense of relief. Bitter because I learned that I had a serious illness, but sweet because I was finally getting answers to why I had been ill for so long. I had undergone years of medical providers questioning the legitimacy of my medical issues. I feel a responsibility to help others not go through what I have been through. I am committed to raising awareness of this debilitating disease.”

Your support ensures that we are able to provide the resources to build and strengthen advocacy on behalf of people affected by scleroderma

Dee BurlileScleroderma has drastically altered Dee’s life. She is easily fatigued and has trouble walking and managing everyday tasks. Prior to experiencing symptoms related to scleroderma, Dee was an active community volunteer and enjoyed a career advocating on behalf of victims of crime. On any given day, you could find her jumping on the trampoline with her kids, planning events for her neighborhood association, or organizing a family game of flag football in the backyard. Growing up, Dee was active in many sports but always loved the game of football the most. “I was the only girl who could throw a perfect spiral in my school,” she says. She now prides herself as a mom who taught her two boys the proper way to throw a perfect spiral pass.

After her diagnosis, Dee was disheartened to find that she did not have a scleroderma specialist or support group in her area. This did not slow her down. She found the Scleroderma Foundation online and started reaching out to others with the disease. 

“The support provided by the Scleroderma Foundation has changed my life. I feel like my involvement with the foundation has once again given me a purpose, and it has provided me with the resources to help others in the scleroderma community.”  

Dee BurlileDee was inspired to do more after attending two Scleroderma Foundation patient education conferences and meeting with legislators on Capitol Hill Day, another event sponsored by the foundation. She became the Southern Idaho Scleroderma Support Group leader and an advocate at the national level sharing her story of inspiration with other patients.    

The Scleroderma Foundation is the first place patients and their loved ones frequently turn to for reliable information. We provide a community of support and hope for those who feel alone and isolated by their disease and advocate for scleroderma patients so that research remains a priority for our legislators.  

“I understand that those of us with scleroderma need to speak with a unified voice. The Scleroderma Foundation is committed to improving the lives of people with scleroderma and I stand with the foundation in achieving their goals and objectives.”

Please make a donation to the Scleroderma Foundation. Your gift ensures that we are able to provide the resources to build and strengthen advocacy on behalf of people affected by scleroderma.