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Do you know anyone with Epidermolysis Bullosa (EB)?

Posted on 5/7/17 at 12:03 am
Posted by Tigerbait357
Member since Jun 2011
71184 posts
Posted on 5/7/17 at 12:03 am
LINK

I just saw this video, almost brought me to tears

quote:

Epidermolysis Bullosa (EB) is a group of rare genetic skin conditions, which is characterised by extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. The skin has two layers; the outer layer is called the epidermis and the inner layer the dermis. Normally, there are 'anchors' between the two layers that prevent them from moving independently from one another. In people with EB, the two skin layers lack the anchors that hold them together, and any action that creates friction between the layers (like rubbing or pressure) will create blisters and painful sores. Sufferers of EB have compared the sores to third-degree burns.







Posted by ClientNumber9
Member since Feb 2009
10204 posts
Posted on 5/7/17 at 12:06 am to
Well, thanks for the downer.
Posted by Giantkiller
the internet.
Member since Sep 2007
25809 posts
Posted on 5/7/17 at 12:11 am to
I followed local toddler Trip Roth's story as it unfolded through a blog his mom wrote. It was a pretty tough read. I can't imagine what it would be like to be a parent of one of these kids, let along be one of these sufferers myself. There was a documentary called "The Boy Who's Skin Fell Off" about an English guy who lived into his 30's with it. It was hard to watch...
Posted by Tigerbait357
Member since Jun 2011
71184 posts
Posted on 5/7/17 at 12:13 am to
I think there are like three types. Usually the first two types don't live very long but the last type lives till early adulthood usually.

Living into your 30's with it is a miracle from understanding how this disease works
Posted by MaroonWhite
48 61 69 6c 20 53 74 61 74 65 21
Member since Oct 2012
3784 posts
Posted on 5/7/17 at 12:14 am to
I don't know anyone with this disease, but I remember watching this video someone posted on Reddit a few years ago.

This is absolutely horrifying.


This post was edited on 5/7/17 at 12:29 am
Posted by DanW1
Member since Jan 2013
1126 posts
Posted on 5/7/17 at 12:16 am to
Nope. So yea thanks for that.

Maybe tomorrow you can bring up SIDS.
Posted by saint tiger225
San Diego
Member since Jan 2011
49203 posts
Posted on 5/7/17 at 12:22 am to
Posted by dbeck
Member since Nov 2014
29454 posts
Posted on 5/7/17 at 1:09 am to
You guys ever Google "harlequin babies"?
Posted by Tigerbait357
Member since Jun 2011
71184 posts
Posted on 5/7/17 at 1:15 am to


They look like aliens
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