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View Full Version : If you are ever feeling sorry for yourself....



WillBrink
06-30-2005, 03:04 PM
Folks, any of you see the program “THE BOY WHOSE SKIN FELL OFF”? If you are ever feeling sorry for yourself, see this show. Jonny Kennedy had a genetic condition called Dystrophic Epidermolysis Bullosa (EB) , a disease I assume is fairly rare as I had never heard of it before. You could take three of the worst diseases you know about, mix them into one, and still not be worse off then a person with EB. His life was total pain 24/7 until he died at 36 I believe. I wont say you will feel better after seeing this documentary, but I promise, you will have an entirely new appreciation of what you have. Think you have a physical problem that’s difficult to overcome? You have no idea….That much I promise you. More info if interested:

http://www.debra.org.uk/help/jk.htm

and

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

Boxer
06-30-2005, 04:24 PM
I will look out for this program being repeated, cheers.

WillBrink
06-30-2005, 04:27 PM
I will look out for this program being repeated, cheers.

Sounds good Boxer. It's not an easy program to watch.

Boxer
06-30-2005, 04:40 PM
Is it that bad? It will have me in tears for sure then. I watch at least a few medical programs a week these days and most of them have me in tears. It really does make you greatful for what you have and annoys me when I see healthy people abusing htemselves day in day out.

I couldn't be an MD for sure. Even with training I would still probably show too much emotion.

WillBrink
06-30-2005, 04:48 PM
Is it that bad? It will have me in tears for sure then. I watch at least a few medical programs a week these days and most of them have me in tears. It really does make you greatful for what you have and annoys me when I see healthy people abusing htemselves day in day out.

I couldn't be an MD for sure. Even with training I would still probably show too much emotion.

Be warned, it will make other medical programs you have seen look like a comedy. I could only watch half of it, then watched the other half a few days later when it was on again. It's not hard to watch from medical gross out sort of way (though a person with essentially no skin is not exactly pretty) it's the human spirit showed by he and his mother that will leave you realizing how much you really have. You wont be the same.

elissalowe
06-30-2005, 04:52 PM
I hadn't heard of it either - but it's not quite as rare as you might imagine...the estimates range from 1 in 50,000 to 1 in 100,000. But apparently, it's a family of diseases, with 3 major types and 16 subtypes, which vary in their severity from relatively minor to life-threatening...some can lead relatively normal lives while others don't survive infancy. It's caused by mutations in the genes for type VII collagen, which are part of the network of fibers which anchor the epidermis to the deeper layers of the skin.

Gene therapy research using lentivirus vectors is ongoing, and looks promising (in animal models, at any rate).