NF2: A True Butterfly, 1 in 40,000

photo by Kelly Coulson Photography

Throughout my life, I have heard from many that I am such an inspiration to others because I have not let NF dictate my life. However, contrary to what others see there was a time in my life that I did allow NF to control me. I was constantly depressed and angry with life despite what others saw. Then one day, in 2011, during one of my bouts of depression I read a newspaper article about Candice, an amazing, strong and a truly inspirational woman that, like myself, was born with NF.
After reading Candice's story, I felt a sense of connection that I have never felt before. Despite my mother and brother having NF, I did not know anyone else that like myself needed to have multiple surgeries to repair the damage that NF has caused.

Candice was born with NF2, and in the course of 46 years has had 28 surgeries. Now I am no mathematician, but that is roughly one surgery every two years. Her face bears the scars left behind from a lifelong  battle with NF2. The surgeries were done to remove various tumors that have left her with an unconventional face. These scars are not just physical but emotional too; each one telling a story of perseverance. When I first saw a picture of Candice I was automatically filled with a sense of sadness because  I wanted what she had, I wanted to love myself.She spoke so eloquently about her life and how she chooses to live it. After reading the article and befriending her on Facebook, I realized I had just learned the biggest life lesson ever, I had to stop allowing NF to dictated my life!

I find Candice, an inspirational woman because she is truly remarkable! Candice does not hide her beauty nor does she stay silent. She participates in triathlons and NF events, she is an avid volunteer in her community, and best of all she's in the medical field! She also shares her story of strength and survival in her Facebook page Butterfly Challenge, a Site for Inspiration.  To me, Candice is a true butterfly because like the butterfly she has gone through a metamorphosis and become a woman of not only beauty but also courage.
 

picture was taken from Candice's Facebook account

" To those who have this disease, staying at home or being sheltered from all the bad things people say, it doesn't help. I've never walked into a public place ever-one day, one hour, one minute-where there wasn't a reaction to me entering the room. Fear, curiosity, what happened to her, disgust from some people. Strangers come up all the time at the grocery store, movie, in the elevator alone, I get questions. But I can use that experience to teach people about this disease, or at least teach them manners." - Candice P.

( from: Tampa Bay Tribune, 02-26-2006-Joe Henderson)