FAQ - epidermolysis bullosa dystrophica
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epidermolysis bullosa?

I have EB, the type i have is simplex dowling meara.. Im in my teenage years and as a girl i dont usually worry about what people think of my appearance. But sometimes i get some blisters which i pop with the right equipment, then they turn into scabs but they always spread. So then i end up with this huge black thing on my face which people love to stare at! I want to know ways to prevent this from happening?

You are doing the best you can with your condition. Just ignore the starers, or confront them if you feel like it.  (+ info)

Epidermolysis Bullosa?

My niece who is 3 years old has this which results in her having lots of blisters, she is in hospital at the minute as she has blood in her urine and the drs are thinking it could be connected to EB and her kidneys could be at risk. Has anyone any info on this condition as we are really worried

There are several forms of this disease. Here is the best site I know about this condition.



http://health-pictures.com/epidermolysis-bullosa.htm  (+ info)

Can I join any branch of the military with Dystrophic Epidermolysis Bullosa?

I'm 17 years old and I have a very mild case of it on my feet.

  (+ info)

can someone with Epidermolysis bullosa get a tattoo?

I have EB and i want to get a tattoo but i dont know if it will affect me....im guessing it might, i may blister or bleed more. but i wanna know does anyone who has EB have a tattoo? or can anyone tell me if it is too Dangerous and or risky and i shouldnt do it...ive been wondering for months.

don't get one. they are bad, unhealthy, unattractive, and they will look ugly when you are older and wrinkly  (+ info)

Does Epidermolysis Bullosa have a life expectancy?

i would like to know if Epidermolysis Bullosa has some kind of life expectancy and quality of like of some one living with this disorder?

  (+ info)

who was the first to get diagnosed with epidermolysis Bullosa?

8 week old Tori Cameron  (+ info)

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

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)

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

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

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)

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