Brittany Sommerfield lives with Friedreich ataxia (FA) and is an ambassador for the Friedreich’s Ataxia Research Alliance (FARA). She has shared her story with PTC to help spread awareness about FA.
“My name is Brittany Sommerfield, and I am from Manitoba Canada. I received a genetically confirmed diagnosis of the rare disease Friedreich’s ataxia (FA) 17 years ago.
It was 2007 and I was only 13 years old. I lived in the ignorance-is-bliss stage for a good four years before my young head realized my clumsy nature wasn’t going away. Initially, I tried to ignore it, but the harsh reality of the truth came in time. It was going to get worse and worse, there was no cure, and I was going to be wheelchair-bound. It was scary, but after a while, and with some amazing family and friends, I learned to find acceptance with my disability. I was finally able to venture out and meet the phenomenal community (“FAmily”) around this disease.
Everyone is very different; awareness and acceptance do not go hand in hand. Awareness is the start though and the time in between is okay. So please take your time.
Alan Thomas, Founder Ataxia and Me, has a great quote to express what Ataxia Awareness Day means to me:
“Ataxia is a Greek word meaning “Lack of Order” …our mission is to bring back some order, to the lack of order.”