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When your face doesn't fit NEUROFIBROMATOSIS BBC1 TUESDAY 9pm

(17 Posts)
RTKangaMummy Tue 15-Feb-05 00:29:37


A film showing 3 people and their stories


ImuststopdrinkingBlossomhill Tue 15-Feb-05 08:27:54

I will be watching this with interest as my friends son has this. Very sad

chonky Tue 15-Feb-05 08:44:20

to hear about your friend's son Blossomhill. Thanks RTKangaMummy, I'll be tuning in too.

ImuststopdrinkingBlossomhill Tue 15-Feb-05 15:55:07

It was so weird as I always thought he was autistic as he had so many traits. It was finally diagnosed as nf when the pead. saw the cafe au lait spots. Awful

jabberwocky Tue 15-Feb-05 16:01:32

We have a friend whose grandson has this. Terrible, terrible thing to deal with. I believe it's genetic?

ImuststopdrinkingBlossomhill Tue 15-Feb-05 16:10:18

I heard it was a rogue gene or something.

Do you know anything about it?

Twiglett Tue 15-Feb-05 16:10:50

what is it?

Twiglett Tue 15-Feb-05 16:11:53

as in how does it manifest in patients?

jabberwocky Tue 15-Feb-05 16:15:32

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.

Twiglett Tue 15-Feb-05 16:16:41

am constantly amazed at the things people have to live with

jabberwocky Tue 15-Feb-05 16:26:24

I know. I have to constantly remind myself to count my blessings that ds has been so healthy. I truly can't imagine what it would be like dealing with something like that.

ImuststopdrinkingBlossomhill Tue 15-Feb-05 20:16:53

Poor friend (haven't spoken to her in a while actually but she I used to see her a lot) has to check her child for lumps every night. I just don't know how I could cope but you do don't you???

RTKangaMummy Tue 15-Feb-05 20:56:00

5 mins

ImuststopdrinkingBlossomhill Tue 15-Feb-05 21:59:39

I just sat with my jaw dropped. 3 amazing, brave people. The things they had to go through.
The first guy who was a twin lives really near to me as I recognised some of the places.
Just so

Punnet Wed 13-Apr-05 13:51:57

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.

jmb1964 Wed 13-Apr-05 14:27:13

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?

jmb1964 Wed 13-Apr-05 14:27:59

Doh, just noticed the date!

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