June 20th, 2022
My name is Rylan and I am 15 years old.
When I was 7, I was diagnosed with two incurable rare diseases: scleroderma en coupe de sabre and PRS.
There are two main types of Scleroderma, localized and systemic. I have the localized one. My scleroderma runs down my forehead and around the inside of my eye. It damages the skin, underlying tissues, and bone. I have half an eyebrow because the disease caused alopecia in that area.
There are many risks with this disease, and fortunately, I have been healthy so far! I was started on medications to suppress my immune system that made me very sick. When I was 8 years old, I had my first surgery. I had several more throughout the years.
For the last 6 years, I have been very healthy with little progression. However, more recently, I have noticed a flare-up in my conditions and have to see my specialists again at the IWK in Halifax, N.S.
I am lucky to have a great support team to help take care of me! I want to do something to show my support for others living with this disease! Please help me raise awareness and Make a Move to support the Scleroderma Atlantic which will provide funding for research to find a cure.
Thank you!