Patients with this develop tumors that can occur anywhere in the body - even the eye which can lead to blindness. Of course, it is the facial disfigurement that most people focus on. This is also called the "Elephant Man's disease" after one of the more famous sufferers. very, very sad. The little boy I know of has perfectly normal mental capacity but most people judge him by how he looks and think that he is mentally deficient.
Didn't see the programme, but feel qualified to comment as I have neurofibramatosis.
The thing is, some of us are lucky and you wouldn't know I had it if I didn't tell you! I do have 'unsightly lumps', but not (yet?) on my face; cafe au lait marks I have always had, not an issue. I ahd one lump cut off, my first, but the scar was worse than the lump. Two more lumps are at the size where it might be worth removing, but it's not a priority. I don't cover them, actually I only remember when DH points out a leaflet or something like that.
As for the learning disabilities, looking back I certainly had problems at this type at school but I never was diagnosed, and now I can cope fine. I didn't get a diagnosis until I was 24, don't know if I am genetic or not as much of my family is dea- no not a sad story, Dad was 2nd youngest of 16 so by the time he got to adulthood, his brothers were old and his parents dead.
The thing is, what i guess I want to say, is a diagnosis of NF isn't necesarily the end of the world; the learning disabilities can be oversome, and NF lumps vary greaytly from person to person.
Sounds interesting - thanks for your story Punnet too - but I don't think it was on here in Scotland (I ended up watching super-flipping-nanny and feeling even more inadequate than I usually do!), anyone know when/if it might be on?