Sammy's Story!

Well... I have NF type 1 which was passed onto me by my father, and my life so far with NF has been one hell of a journey as I'm sure it has for all of you. I was diagnosed from birth and they noticed straight away a problem with my left leg, (I'm not a 100% what it was, I'd have to ask my mum and get back to you) They predicted my leg would break when I was 6, unfortunatly at 18months it broke. I had around 30+ operations on my leg none of which where successful, (One operation included having a bone removed from my "good leg" and transferd into my "bad leg") when I was eight years old the doctors told me that there wasnt really anything they could do, so I had my left leg removed through the knee. I thought that would be the end of my problems, it was great I could play outside without my wheelchair I could climb trees I could do everything a normal kid could do.... then about a year later I started suffering enourmous amounts of back pain and all my doctor had to say was "Its part of your condition your gonna have to learn to live with it" My mum was very angry at his lack of help so asked one of my old doctors to see me, after an MRI scan they discoverd I had a Plexiform neurofibroma which was pressing againts my nerves. The medication helped but as it kept growing things got worse, they couldnt remove it because it would mean taking the risk of being paralysed. So I battled on till I was 15, I just couldnt take the pain anymore and was referred to a specilist who offerd me a morphine pump. This has been a God send and im very grateful for it, it's a small pump which is implanted in my stomach which delivers morphine to me constantly. The neurofibroma is growing but very very slowly so its just being kept an eye on. I'm still wheelchair dependant but I'm more mobile than most so I'm thankful for that. I think thats pretty much it for my "NF Story", the only other problems I face related to NF is episodes of deppresion and a lack of co-ordination. I do feel lucky however, some people have been affected much more severly, so I dont complain.

"Little is the luck I've had,
And oh, 'tis comfort small
To think that many another lad
Has had no luck at all"

That is one short verse I shall never forget.

Update: The problem with my leg was known as a pseudoarthrosis caused by the NF.