What is this disease?
December 6, 2011 12:10 PM Subscribe
Can anybody identify this disease? My college friend, who evidently had it, recently passed away as a result. I never asked her exactly what was wrong for fear of being insensitive, but now I would like some closure. Description of observable symptoms inside...
A friend of mine from college passed away last month, and even though we had lost contact after I transferred to another school in a different state, the news is still very hard to take. Even though I didn't remain close to her after the move, I have fond memories of the times we spent together. Her passing, however, has left me with a big unanswered question: What did she die from?
Despite the fact that we shared many a class and coffee outing together, I never brought up her illness/deformity because I wanted her to know that it didn't matter to me in the least and I figured if she wanted to talk about it, she would bring it up. She never did, and I admired her greatly for her strength and positivity.
The symptoms that I could observe were as follows:
- She was on the shorter side (5'2"-4"), and very very thin (est. 95-100 lbs. - definitely no more than 105 lbs.)
- She had no fingers.
- Her entire body was always almost entirely wrapped in gauze bandages. The only skin she left revealed was her neckline and her face; The skin there looked as if she always was experiencing a rash/shingles, or that she had suffered 3rd degree burns all over her body.
Other than these distinguishing factors, there was nothing else I could see out of the ordinary.
She was a wonderful, strong person and an extremely talented artist, and the world is certainly worse off without her. If anyone has any idea what this disease might have been I would appreciate some insight. Thank you.
A friend of mine from college passed away last month, and even though we had lost contact after I transferred to another school in a different state, the news is still very hard to take. Even though I didn't remain close to her after the move, I have fond memories of the times we spent together. Her passing, however, has left me with a big unanswered question: What did she die from?
Despite the fact that we shared many a class and coffee outing together, I never brought up her illness/deformity because I wanted her to know that it didn't matter to me in the least and I figured if she wanted to talk about it, she would bring it up. She never did, and I admired her greatly for her strength and positivity.
The symptoms that I could observe were as follows:
- She was on the shorter side (5'2"-4"), and very very thin (est. 95-100 lbs. - definitely no more than 105 lbs.)
- She had no fingers.
- Her entire body was always almost entirely wrapped in gauze bandages. The only skin she left revealed was her neckline and her face; The skin there looked as if she always was experiencing a rash/shingles, or that she had suffered 3rd degree burns all over her body.
Other than these distinguishing factors, there was nothing else I could see out of the ordinary.
She was a wonderful, strong person and an extremely talented artist, and the world is certainly worse off without her. If anyone has any idea what this disease might have been I would appreciate some insight. Thank you.
I wonder about harlequin-type icthyosis, except I think surviving that condition long enough to attend college may be somewhat rare.
posted by jayder at 12:21 PM on December 6, 2011
posted by jayder at 12:21 PM on December 6, 2011
Response by poster: It looks as though she had symptoms of both epidermolysis bullosa and ectodermal hypoplasia. From her attitude, you would have never known that she was going through all that - It's a huge testament to her strength.
Jayder, I don't believe she had harlequin-type icthyosis, because I don't think it would have been possible for her to attend classes etc. She looked quite a lot like the picture of the child in the epidermolysis bullosa article from Wikipedia.
Thank you all for the info, I appreciate it!
posted by bzzt at 12:30 PM on December 6, 2011
Jayder, I don't believe she had harlequin-type icthyosis, because I don't think it would have been possible for her to attend classes etc. She looked quite a lot like the picture of the child in the epidermolysis bullosa article from Wikipedia.
Thank you all for the info, I appreciate it!
posted by bzzt at 12:30 PM on December 6, 2011
This thread is closed to new comments.
posted by genmonster at 12:16 PM on December 6, 2011