Choose to have fun

By John Huynh

My name is John, and I have Neurofibromatosis – Type 1.

At an early age my mother knew there was something different about me.

My family doctor knew I had NF but did not say anything because “nothing could be done about it”. Another doctor formally diagnosed me in 1987. Neurofibromatosis was a scary and unfamiliar word at the time and my mother was devastated.

School can be an unpleasant when you are different. I remember classmates calling me names such as “shit stain” and “lumpy neck”. I hated changing clothes in gym class because of my café-au-lait spots and remember going home in tears because of the teasing.

My mother treated me like a normal kid. I was allowed to go outside to play, and grounded when I did something wrong.

In high school the teasing subsided, except for one student who called me “bee stings” all year. I no longer cried, but it still hurt. In grade 11 we moved to the suburbs, a fresh start. I made new friends and started to fit in. All was well, or so I thought.

In May 1996, I started noticing pain when I walked. I lost my balance and fell unexpectedly. My friend laughed [...] continue the story

Marcy

I am 52 years old, and I have had NF-1 since birth, the result of a spontaneous mutation. My parents are deceased, and I have two older sisters, both unaffected. I have cutaneous and plexiform tumors. NF mostly affects the left side of my body, including vision, hearing, and some motor function.

I was diagnosed at 2 yrs of age by our family doctor, and have had almost as many surgeries as birthdays.

I have a Masters degree in Counseling, am a Certified Professional Coder, and just finishing up an Associate’s Degree in Health Information Technology, the result of a midlife career change. I currently work as a caregiver while I complete my degree.

I was married once; I’m now divorced and single and happy. My personal mantra is: I am a woman with NF, but my NF does NOT define me or defeat me.