Advocates on Steps of Congress 2013
Please leave this field empty

Living with linear scleroderma en coupe de sabre

Living with linear scleroderma en coupe de sabre
Living with linear scleroderma en coupe de sabre

I was diagnosed with linear scleroderma in coupe de sabre when I was about 5 years old after my mom noticed that hair had fallen out on the right side of my head. I'm not sure exactly when the line on my forehead first appeared but it can be seen in pictures after that age.

I remember going to the hospital to have my skull x-rayed and seeing a dermatologist for a while but 35 years ago there was little information or support and my mom was told there was nothing they could do. The changes to my face have been extremely slow and gradual with the exception of the fact that I did notice more change after each of my pregnancies. The scars from Scleroderma were more to my self-esteem growing up as a child that looked different and didn't know or understand why. Roughly 10 years ago my cousin was diagnosed with systemic scleroderma and I became aware of the many ways that this disease can affect a person's life. I realize now how very lucky I am to have my health and raise money and awareness on her behalf and the thousands of others for whom this disease is life threatening. I am using the visibility that this disease has on my face for good spreading the word on Instagram and Facebook for June awareness month.

 

All active news articles