Stories of NF: Susan R.

I was 11 years old when my primary doctor, who suspected NF, sent me to a neurologist in 1974. The neurologist diagnosed me with NF.

NF had been mostly good in childhood. I had surgery on an eyelid which made it droop a little. No dates in high school, other than that things were ok, minimal pain, remained very active. Around 45 year old, I started having pain and was always tired. At age 53 had to go on disability because of chronic pain. NF has affected my future plans to travel. I go on all day adventures, participate in community activities, play with my granddaughters, but other than that I’m healthy, though I’m getting more bumps. I’m thankful I can still take care of myself live by myself. Things could always be worse.

I love to draw and color helps with anxiety and depression. I am disabled but I have worked with kids and adults with disabilities for over 30 years, volunteered for the Special Olympics, and worked at a food bank, a very humbling experience.

My family and friends are a great support. My granddaughters are my biggest joy; they keep me going every day. I am blessed with healthy NF-free kids! I have my jazzy chair to get me around and a walker for community outing, going to visit friends. I can still drive. I do sit-down yoga and go to Curves which helps with my depression. I have wonderful friends in my 55 over apartment complex.