Living with Scleroderma

Jamie’s Story

By June 22, 2021July 12th, 2021No Comments

In this fourth story of Scleroderma Awareness Month, Jamie shares her passion for spreading the word about scleroderma. “I do not want future generations to have this bombshell diagnosis dropped on them: ‘You have Scleroderma’ and have no clue what that means for them,” she says.

Jamie was diagnosed with scleroderma in March 2015 “after seeing 3 or 4 doctors about my purple, painful, cold hands and severe joint pain,” she says. “This is day my life changed forever!” Living with scleroderma has impacted Jamie in both difficult and positive ways. “Scleroderma took one of the most important things in my life which was my career,” Jamie says, but, “scleroderma has given me a new purpose in life to share my love with those who are also affected, while also sharing my knowledge of the disease.“

She shares that “scleroderma is now a huge part of my story, but I have learned that I have control of the pen.” Part of taking agency in her story is advocating for awareness and research, “because a cure is needed for all of us suffering from this disease.” Join Jamie this month (and beyond!) as an advocate, and #SayScleroderma.