please tell me that it's a joke

[taylor]

http://www.metro.co.uk/weird/article.ht ... _page_id=2

[Pat]

http://www.metro.co.uk/weird/article.ht ... _page_id=2

My son has NF.It's no joke.

[Ozpat]

[boudicca]

God, poor guy. It never ceases to amaze me how thoughtless some people can be about things like that. I understand very well why humans (and other animals) react to great deviations from "normal" apparance in the way they do, nature can be very cruel in some ways... but FFS, are we not also evolved enough to recognise and respect the humanity of those with the most extreme deformities? There is a man under there, and god knows the strength it requires to survive in a world that looks at you in horror and disgust.

Pat, my very best wishes to your little boy, I hope he gets the best treatment and care.

[Quiff Boy]

http://www.metro.co.uk/weird/article.ht ... _page_id=2

it's no joke. your god is that cruel.

[Tidal]

That's horrible

[6FeetOver]

I'm very, very sorry to hear that, Pat. I hope your son's prognosis is favorable, and that he's not in pain. I've an online pal who I've "known" for years who suffers from NF; he's spent what amounts to years in surgery, and is wracked by constant pain. The scar tissue that's resulted from the tumors' removal has wreaked nearly as much havoc as the tumors themselves; reaction to the visible manifestations of his condition from the largely-ignorant public has caused - and continues to cause - grave emotional and psychological damage.

[6FeetOver]

FFS, are we not also evolved enough to recognise and respect the humanity of those with the most extreme deformities?

Humans haven't even gotten past skin color yet.

[scotty]

I'm very, very sorry to hear that, Pat

Like what she says, I never knew

[boudicca]

FFS, are we not also evolved enough to recognise and respect the humanity of those with the most extreme deformities?

Humans haven't even gotten past skin color yet.

Doesn't mean we shouldn't

[Pat]

Here's Paul.




Paul is nearly 4 and has NF1. He has tumours all over his body but nothing on his face or hands .Nothing new has appeared since he was 1.There is no treatment, it's a case of watching and waiting.Other problems related to NF are learning difficulties (he's not speaking yet,took a long time to learn to walk etc.) He's also more like a 2 year old than a 4 year old.
Thankfully the example Taylor linked to is rare, Paul is at the mild end of the spectrum ,Sinnie's friend is somewhere inbetween.Most people with NF can go through their whole lives and not know they have this condition.There are about 25,000 people in the UK with NF.

A good site for more info is the NFAuk


Paul is also a cheeky wee rascal and has the ability to wrap women around his little finger (and he knows it).A skill that will no doubt come in handy when he's older

[6FeetOver]

FFS, are we not also evolved enough to recognise and respect the humanity of those with the most extreme deformities?

Humans haven't even gotten past skin color yet.

Doesn't mean we shouldn't

That goes without saying. Sadly, I fear that it's an unrealistic expectation. Perhaps in another 10,000 years?

...

[6FeetOver]

Here's Paul.

Lovely little lad! Give him a big hug from Auntie Sinnie, would you?

[boudicca]

Here's Paul.

He's a wee soul

[Big Si]

He looks just like his Dad

[paul]

What a sweet looking boy you have, Pat!

[psichonaut]

very sad for your son , Pat