FAQ - Epidermolysis bullosa simplex
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Can Epidermolysis Bullosa give you skin cancer?


Ok I have a skin condition called Epidermolysis Bullosa (EB). It is only a mild form of it but I have read in some places that it can cause skin cancer. Is this true??? My dad also has it and he had skin cancer when but he said it was because of the sun but I'm not sure if it was from the EB???? help please

THANKS heaps :) xxx
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Yes, patients with Epidermolysis Bullosa have a higher risk for skin cancer (Squamous cell skin cancer)

In the sources you find a link to a page from the National Institute of Health, so you can be pretty sure that you can trust it.  (+ info)

do you have epidermolysis bullosa?


i have simplex, i am a 12 year old girl. what kind do you have? how old are you? :]
when i say i have simplex [this is for those of you who do not know:] it means i only get blisters on my hands in feet therefore i do have EB. please answer yall:]
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  (+ info)

Is there any case of Epidermolysis Bullosa that has been totally cured?


There is no known cure.  (+ info)

My husband has Epidermolysis Bullosa and suffers more and more each day, any suggestions to ease pain?


The pain meds the doctor gives him isn't helping any more...please help
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Let your doctor know that the pain medication is not helping. He cannot know this unless hubby lets him know. He will increase the dosage or change to a higher one.

This is a very serious disease and you should follow only your doctors advice, not seek it on the internet!

Good luck and God bless to you and your hubby.  (+ info)

is Epidermolysis bullosa curable?


i was watching this video on youtube on a iphone 3Gs review and the kid doing the review had Epidermolysis bullosa. he said it in the description of the video.
i just want to know if that kid is going to stay like that for the rest of his life? or is it curable? i hope its curable i felt really bad for him

and the comments some people made, made me really mad idk why
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Hi..
Epidermolysis bullosa is a rare genetic disorder caused by a gene mutation. it's characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma.

so the goal of treatment is only to prevent the formation of blisters and subsequent complications& measures to avoid skin trauma (damage) and to avoid hot environments.

because it's a genetic disease , no drugs are known to correct(cure)the underlying molecular defects BUT :-

Current clinical research at the University of Minnesota has included a bone marrow transplant to a 2-year-old child who is one of 2 brothers with Epidermolysis The procedure was successful, strongly suggesting that a cure may have been found.
A second transplant has also been performed on the child's older brother, and a third transplant is scheduled for a California baby.
The clinical trial will ultimately include transplants to 30 subjects  (+ info)

what cream should i use if i have Epidermolysis Bullosa ?


are der any creams i can n buy in the united states
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There is no real treatment for this disease. You should speak with your physician about treatment.  (+ info)

My sister is carrying a child with Dystrophic Epidermolysis Bullosa,and tay sachs,shes thinking about abortion?


she is 11 weeks, they did a chorionic villus sampling, she got the results today, shes extremely upset
These diseases make it almost certain the child will die before age 4, and if the child does not die, it will live a very painful life, and definatly not a full one. They are both genetic inherited disorders,
bullosa will cause my nephews skin to fall off at the slightest touch, and could even cause the skin to fall off internally in the lungs, and throat and cause suffocation. massive blistering of the skin develops in response to minor trauma, varies in severity which could be a lethal form in which the constant massive blistering and scarring ultimately lead to death


tay sachs, is a fatal inherited disease of the central nervous system where affected babies lack the necessary protein for breaking down certain fatty substances in brain and nerve cells. These substances build up and gradually destroy brain and nerve cells, until the entire central nervous systems shuts down, causing the child to go blind, become paralyzed and die by age 4

she watched a documentary man who lived with epidermolysis bullosa, and he said that with the constant pain he has to endure everyday, he wished his mother had aborted him.
she is so lost and im not sure what to say to her, shes coming to me for advice, but i dont have any.
What would you do if this situation personally faced you?

supportive posts will be printed out and shown to her. please be kind.
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  (+ info)

does anyone suffer from epidermolysis bullosa and have a cure?


There is no cure from EB. There are ways to lessen pain and to heal faster depending on how bad you condition is. There are cremes with pain meds in them...I use Bacraban...it is my favorite. Check out Debra.org and the EB foundations site.

Also if you have a dermatologist that understands EB, they can help you also with pain managment and healing.  (+ info)

can people with Epidermolysis Bullosa have children?


After looking around, it doesn't seem like there is any reason why not. You can always ask your doctor if there is a reason, but unless you are on medications that would give you any reasons, I would say yes.  (+ info)

is epidermolysis bullosa externally, internally, biochemically, psychologically, etc...?


what is it????
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Its a genetic disorder but seen externally.

Hope that helps  (+ info)

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