Cane and wheelchair help Sean get around.
When I was three days old, the nails on my feet and hands turned yellow. The pediatrician told my mother that it was because of a solution that was used at birth. They would grow out white. The day I was discharged from the hospital at 5 days old I had a large sore on the side of my mouth.
At 6 weeks, I had what the doctor called thrush in my mouth. At 18 months, I was hospitalized for almost two weeks with an infection that wouldn’t clear up. The next four years were a journey of doctors, specialists, and different stories about my disorder. At one point, Rhode Island Hospital recommended that I go to a New York hospital and have a complete blood transfer. This was a dangerous procedure so at this point my mother went to the Mass General with me. I was four years old and I was followed there for years. They would try different creams and topical treatments but nothing ever alleviated the pain from my blisters.
I had a terrible time walking because of the large blisters on my feet. At 6 years old, I was fitted for leg braces. The reasoning they gave me was the pressure of walking would be directly under my knee, so it wouldn’t hurt as much to walk. This lasted maybe a year. My mother found a man that made sneakers for the Boston Celtics and he made sneakers for me after taking impressions of my feet. This was helpful for a while.
I am now age 37 and use a cane or wheelchair when I have a lot of walking to do. I don’t get infections as often as I used to, but still have blisters on my feet and hands. I crawl at home most of the time. My knees and knuckles get sore, but nothing compared to my feet when having to walk. When I crawl, there really isn’t much I can’t do. My arms and shoulders are strong.
I continue to try different creams and ointments. Some will work for a while on my hands but then stop working. No creams have ever really worked on my feet. I am always offered pain medication, but I don’t take anything.