The story of Skylar
Rare Disease Day, one of the most important days of the year for those of us who live a rare disease. At the age of 13 was when I received a 100% positive diagnosis for Geroderma Oseteodysplastica, GO for short. At the time I was diagnosed there were only 9 cases, that we knew of, in the entire world. I was the only one diagnosed in the U.S. at that time. This number has grown over the years. Now, there are 3 cases in the U.S.
GO is a mutation of the genes, therefore there is no cure. Nothing to do to reverse it. The only thing we can do is work with therapist and have surgeries to deal with the symptoms. Thankfully, I’ve been going to the best hospital, Cincinnati Children’s Hospital, since I was a baby. I’ve received the best care and treatment a person with a rare disorder could ask for.
GO impacts your entire body, from the top of your head to the soles of your feet. I have learned to take it one day at time, whether it is a good or bad day. I will live my life to the fullest.
Having this disorder has made me the person I am today, so I wouldn’t change anything about it. It has made me strong when being strong was my only option.
{Alone we are rare, together we are strong} •Handprints Across America•