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"The worst disease you've never heard of" leaves Tucson baby struggling

Brystal has blisters all over her body

"The worst disease you've never heard of" leaves Tucson baby struggling

CREATED Aug 19, 2012

Brystal has gone through more in her nine months of life than most adults, in a lifetime.

Reporter: Tammy Vo

TUCSON (KGUN9-TV) - 9 Month old Brystal is too young to understand what's wrong with her, but she feels it every day. She has a rare skin condition called Epidermolysis Bullosa, also known as EB. A disorder that has been labeled "the worse disease you've never heard of". The family says that only one in 50,000 babies get the genetic disease, and some don't live to see their first birthday.

"When you read about it, they say it's like getting a second degree burn" said her mom, Brayce Brewer. When her daughter was born, she was missing skin on her legs and no one knew why.
"It was really hard. I hate talking about it because I cry... the first thing they said to us was 'What's wrong with her leg?' It's not what you expect to hear when you have your baby."

Brystal's skin is so delicate, it rubs off. It's painful and itchy. She gets blisters from simply changing her clothes, and her skin bleeds in the bathtub. Her parents, Brayce Brewer and Brendan Murray, are sharing their story, hoping for answers to this incurable disorder.

"There needs to be a cure. One in 50,000 babies get this. It's rare but it's still out there. Nobody knows about it."
For more information on EB click here.

For more on Brystal's story and to get in touch with her family's support group, visit their blog.

National EB Awareness Week is the last week of October.