Ed note: During May, NF Awareness Month, we will be posting stories of individuals and families living with and overcoming the challenges of NF. If you’d like your story to be featured please email ggleeson@ctf.org with an article of approximately 500 words, and your picture (or your family’s picture). If you like this story please share it with your friends and family via email, Facebook, Twitter etc. To help spread awareness this month we are also introducing the tagline “Help make NF Not Forever'” and the Twitter hashtag #NotForever, together we can do wonderful things to promote NF awareness and research, thank you for your commitment to the cause.
Hi my name is Aaron, I am going to talk about my experiences living with NF.
I was diagnosed with NF when I was about 3 years old. The way NF affects me is mainly from scoliosis, my spine has two curves. I had a spinal fusion when I was 8 on the upper curvature. I have several neurofibromas on my chest and back, but they don’t really cause problems, apart from a large plexiform on the side of my trunk. I am also dyslexic, so needless to say primary School was an interesting experience!
The problems I have experienced with NF are both medical and personal.
Since the spinal fusion I hadn’t had any issues with NF until 2004 when I started to experience chronic lower back pain. I went to my GP who prescribed some meds for me, but the pain didn’t go away. Fearing there could have been a change in my scoliosis and the fact I hadn’t seen him for over 10 years I decided to see my orthopaedic surgeon. He concluded that there were no new issues with the scoliosis and that because of the curvature I would be more prone to back pain.
Then I went to a neurologist because I hadn’t seen one since I was a teenager. I had an MRI which showed no Neurofibromas on my spine.
I was then referred to a new doctor. He said that eventually the lower back would need surgery too but it would be 20 or 30 years down the line. He suggested that pain management was the best solution. The pain specialist recommended an epidural injection containing a slow release pain medication.
Today between the injections and Meds the pain level is under control, unless I’m up dancing half the night.
On a personal level NF has affected me too.
Even though anti-discrimination laws exist in my experience some employers still don’t treat people with medical problems the same as “normal” people.
I have gone for lots of interviews in the past for jobs that I could do. I am not saying every job I have never gotten was only because I have NF. But some employers only see the small guy with the hump on his back and not the potential I would bring to their business.
Another aspect in which NF has affected me is the difficulty in meeting a partner or the way people stare at me.
We live in a very materialistic world where image and look are more important than honesty and integrity.
I’m not going say that “Being Different” doesn’t leave me feeling a little blue at times.
There are times when I wonder what my life would have been like if I didn’t have NF.
What job would I be doing?
Where in the world would I be living?
Would I still be single?
These are all questions that I will never have the answers to. I came to terms with having NF a long time ago, I just wonder sometimes.
When I look in the mirror I like the person I see and I think most the world does too.
Having NF hasn’t stopped me doing some of the things I love.
I believe there is a plan for everyone and I have faith that things will be alright in the end.
