It was the summer of 1987. My uncle and I were seated in one of the small clinical examination rooms of Shriner's Hospital for Crippled Children in Los Angeles, CA. It was my second trip to the US. The first was a couple of years ago -- when stayed about a year in the US [...]
Growing up as a kid with NF, I'm sure my parents had this nagging question inside their heads at one time or another: "Will he grow up to be normal?" I'm guessing that the "growing up to be normal" question isn't really exclusive to parents whose kids have NF, other disabilities or special needs. It's [...]
I have never been able to remember when I first experienced the pain associated with my NF. Perhaps it was because I always had a high-level of pain tolerance even when I was very little. But as I grew older, my left leg -- on which had numerous nerve endings had formed -- had become [...]
Because of neurofibromatosis, my left leg was malformed. It was longer than my right leg and was continuously growing faster. It was one of the first things noticed by my parents before they found out that was related to neurofibromatosis: whenever I walked or ran, there was a good chance that I'd trip over myself. [...]
"What is going to happen?" I had wondered to myself. I was 4-years old and I was going to the hospital operating room. They told me that the doctors were going to take a look at something inside my leg. I was trying my best to put my bravest face on. My parents had assured [...]