Michelle's Story:

Submitted April 11, 2000

Hi from London, England.

My name is Michelle and I was diagnosed when I was 13. (I'm 36 now.)

It first started when I was six and had my first epileptic fit. At first the doctors thought I had epilepsy because of my difficult birth. As I got older my spine started to curve, and so the doctors diagnosed Scoliosis. By the time I was 13 I had a major operation on my back to correct my spine. It was about 50 per cent successful and they inserted a 'Harrington's rod' on my spine. It's still there. I also have an ovarian cyst and a cyst on the base of my spine.

After the operation, bumps started to show up on the surface of my skin and the Doctors diagnosed 'Von Recklinghausen's Disease'. I felt scared, frightened, lonely, isolated, bitter, ashamed even suicidal. At that young age I kept thinking 'Why me.'

So I grew older, and more and more fibromas appeared on my body. So now I have fibromas all over my back, my chest, a few on my face, arms and legs, some on my bum and a couple in places unmentionable.

I too have lots of spots, but I thought it was because of my bad diet (I live on crisps and junk food), but now I know differently. I have only had two fibromas removed but luckily for me I see lots or specialists for all the complications of this illness.

I have lots of good friends and I go clubbing and to the pub a lot. I meet people that fancy me but I'm terrified of them seeing what I look like in the flesh. My friends think I should give these people a chance, but I feel if they knew what it was like to have NF then they would try and understand my fear of getting into a relationship. If I had met someone before I developed NF then things would be fine.

I have had a few relationships, but when it came to intimacy I always kept a T-shirt on.

I will soon be setting up an interactive website on NF.

Michelle Email me!

Michelle / Added April 2000