the boy whose skin fell off...

[Paddy]

did anyone watch this?
what a horrible affliction. i proper cried.

[pille'ocheoni]

just fell right off? like standing in a room and *snap skins on the floor and he feeling that burning air feeling when your nose is dry and its cold outside?

i have to know more about this

[Paddy]

no, he had a horrible genetic disorder called EB, a friction related disorder, so basically whenever he was touched or bumped his skin would come up in blisters and sores. he was actually 36 years old, but his body could never muster up the energy to go through puberty.
a very moving documentary.

[pille'ocheoni]

wow. yeah sounds so. any links to this?

[Paddy]

here you go pille...

http://www.channel4.com/health/microsites/B/boy_whose_skin_fell_off/

[emef]

damn , i missed it, wanted to watch it too, bugger

cheers for the link

[Basic 2: The Revenge]

Was it like "Tim Tyler: The Boy Who Lost His Laugh"?

[Mirsha]

Originally posted by nik-nak
he was actually 36 years old, but his body could never muster up the energy to go through puberty.


He actually did go through puberty, the reason he a boys voice was his vocal chords scarred permenantly damaging them.

I think he's definately one of the bravest people I've ever seen. The pictures of him looked bad enough, he looked like he had fungus growing on him and the first view of him with his hat of was emotionaly invoking. The sheer state of him post No. 10 visit was awful, they way it was so obvious his body had just finaly given up.

[May Kasahara]

I watched it and cried my eyes out also - I thought it was excellent the way that the film showed him as a whole person, and not just a sufferer of a strange and interesting disease, if you know what I mean. It was all the more affecting for it really; so easy to forget what constant pain he was in, until he suddenly started crying mid-joke or sentence.

[Paddy]

i loved that too, may. they showed that he could be just as obnoxious and bad tempered as the rest of us, an aspect many documentaries about people with disabilities tend to overlook, leaving the viewer looking at the subject through rose tinted spectacles.
when he started to cry mid-sentence and stuff, that totally broke my heart, but nothing compared to when his mum took off the bandages on his back, and he was just whimpering, then screaming in pain.
mirsh, they actually said that he never went through puberty, by the way, so, na na nanna naaaa!

[Orang Utan]

Is the bloke who looks like a young Bob Hope in the publicity photos?
I can't believe he managed to live to 36. Poor fella. It makes you feel rather sheepish about moaning about the odd cold or hangover.

[Mirsha]

I was doing PC stuff whilst watching it so I may have missed out bits of information. I laughed my ass off when he made a joke about wanking though, totaly not what you expect or when he starts doing humph movements at the camera after meeting his favorite pin up.

[Lady E]

Originally posted by Basic 2: The Revenge
Was it like "Tim Tyler: The Boy Who Lost His Laugh"?

ha ha ha basic, i cant believe you mentioned that!


i still have a few personal jokes with my best mate about that programme which we watched when we were 13 or something.

was it german? i seem to remember it being very badly dubbed.

[FiST]

think it was austrian, was very strange programme

[r_v]

i was gonna watch this but i wimped out 'coz i thought it'd be too heartbreaking to watch. from reading the comments here though, it sounds like it wasn't all miserable. i saw the trailers for it but didn't realise he was that old.

[grobelaar]

Originally posted by FiST
think it was austrian, was very strange programme

That's the programme I mentioned some time ago on the forum... Is it kinda weird and was it dubbed into English... only appart from that you knew it wasn't English because like all the families portrayed in it, were weird a sinister - like everyone belonged to some strange collective where the world's elite lizard people are sheltered - oh yeah Austria... (sorry bad joke...)

[Skidook]

Very moving programme. The guy was seriosly brave and good humoured till the end. Respect.

[Paddy]

word.

[V Knid esq]

Do you think he was ever tempted to salt and bake the skin as it fell off to make a sort of "people-pork scratchings"?

[Daddys Girl]

Knid - you bad man!!!! :o)

He did mention though that his father attempted 'alternative treatments' for his condition - including giving him a saltwater bath, which must has been utterly horrific for him...

I also admit to having shed some tears watching that last night - and that unexpected masterbation joke he cracked, made me smile

D_G ;o)

[Paddy]

salt water baths are actually what docs do for burns victims. i think its a very weak saline solution.

[Tim Exile]

I caught the last 20 mins of it, and even that managed to move me quite a lot. Stoicism all round though. His family get a few doffs of the cap too!

It was a very hopeful programme, I thought. That was the characteristic of Jonny that shone through the most. I kept on thinking about the effects of his braveness on future EB sufferers.