Life Video

BY NICOLAS FERNANDES


A woman whose skin tears from the slightest touch has defied the odds, living alone, holding a job and even traveling the world.

Rachel Nasuti, 27, of Sterling Heights, Michigan, USA has been able to adapt to her severe case of Epidermolysis Bullosa (EB) so that she can be independent. 

The rare condition means that every day activities such as carrying grocery bags cause her skin to blister, as well as leaving her fingers stuck together.

To protect her skin from infection and further damage, a nurse spends hours wrapping her body in extra “mummy” bandages every day.

Rachel picks everything up using both arms instead of her hands and has door levers instead of knobs on every door in her house.    

She has even modified her car with a hand control on her steering wheel and cat collars on the door handles.

PIC BY RACHEL NASUTI / CATERS NEWS

By altering her surroundings, she has been able to work as a medical appointment driver and travel to England, France, Spain and parts of Africa in addition to seven U.S. states.    

The thrill seeker has even gone as far as getting 14 tattoos on her fragile skin and doing dangerous activities like boogie boarding and riding a mechanical bull.

Rachel, a medical appointment driver, said: “EB does not stop me from doing anything I want to do. If I want to do something, I find a way to adapt. 

“Everyone has goals they want to achieve, and nobody should feel limited because of a health condition.

“I can’t pick things up with my hands because they are fused together. I have to modify my apartment and my car so that I can live by myself and drive.

“I wear extra bandages for protection. If I didn’t, I wouldn’t be able to do half of the things that I do.

PIC BY RACHEL NASUTI / CATERS NEWS

“I love traveling. I don’t care that it takes me ten times longer to get through security at the airport. I want to see the world.

“I like to call a lot of the things that I do stupid because they are reckless. But I love doing them.

“I like art and that is why I have so many tattoos. My pain tolerance has become so high that most of the tattoos didn’t even hurt.”

Rachel dislikes when people in the EB community refer to their condition as the “worst disease” because it has not limited her too much.

She said: “People call it the worst disease, but it can’t be if I’m still able to do all these things.”   

While in public, she often gets stares from strangers who are curious about why she has so many blisters.

She overhears them trying to guess what happened to her, often mistaking her for burn victim and confronts people who confuse it.

Rachel said: “I do not suffer in silence. I make sure I say something every time.

“When I hear people trying to guess what I have, I will turn around and tell them that I was born with a skin disorder.

PIC BY RACHEL NASUTI / CATERS NEWS

“When people stare at me as I’m walking by, I either stare back or say hello to them.”

The genetic connective tissue disorder affects one in every 20,000 births, according to the Dystrophic Epidermolysis Bullosa Association. 

Dr. Lara Wine Lee of the Medical University of South Carolina, says that wound care is the primary treatment obtainable at the moment.   

The dermatologist said: “There is no cure, but there are a wide range of wound care treatments available.

“There is a lot of research going on and doctors are working towards clinical trials. We’re definitely closer than we’ve ever been to finding more treatments and products that will improve wound healing.”

She added: “It can shorten lifespan and diminish the quality of life in every way possible. It can cause a lot of pain and a lot of troubles with movement, especially with eating.

“It is very difficult for them to be independent. They usually need a lot of help with bandage wrapping and feeding themselves.”