Jonathan MigneaultScience, Technology, Health beatOctober 13, 2006Assignment #4

Imagine your skin is made up of layers that are held together by glue. Now,

imagine that glue disappeared and there was nothing left to hold your skin together. Such

a thought would be difficult for most people to accept, yet it represents Alice Ervin’s

daily reality.

Ervin was born 20 years ago with a rare genetic disorder called epidermolysis

bullosa (EB). Only 150 Canadians have it.

Blisters and scars cover her small and fragile frame. Wherever she goes, people

stop, they stare, and they judge.

Ervin’s mother, Linda Ervin, says people have accused her and her husband,

Randy, of abusing Alice, burning her and neglecting her. One woman told her, “If only

[you] believed in Jesus Christ this never would have happened.”

“People judge you based upon what they see. They don’t judge what’s inside,”

says the younger Ervin.

As she grew up, Ervin went through a stage where she did not have any friends.

She says the seventh and eighth grades were especially bad as kids left her out while they

formed their own groups. After her elementary years, she went to the arts school called

Canterbury High School. There she says people accepted her for who she was.

Ervin has now started her third year in Carleton University’s journalism program.

To get so far she has had to persevere through many moments where the outlook seemed

bleak.

From the moment Ervin was born doctors knew something was wrong, says her

mother. She survived because doctors at that hospital, in Washington D.C., had come

across another case of EB. They immediately had her on powerful painkillers and fed her

breast milk through a feeding tube. It took over two months before her parents could take

her home.

They quickly had to adjust to their child’s special needs. “We just managed,”

says Mrs. Ervin.

Her daughter takes special medicines every three hours, has bandages that she

changes twice a day and sees doctors on a frequent basis. She sees a dermatologist every

six months to check for skin cancer. Almost half of those with Ervin’s type of EB die of

skin cancer before the age of 35.

Of the three kinds of EB: simplex; junctional and dystrophic, Ervin has the last

and most destructive. She remains optimistic and says she recently met an 83 year-old

woman with her condition.

Things as simple as eating dinner become a grueling and time-consuming exercise

for Ervin. Because her mouth is so small, her mother says it would take her an hour to

eat a hamburger. To get the nutrients she needs Ervin usually eats through a feeding

tube.

Her mother says they used to feed her all the time. It would take nearly the entire

morning for breakfast and after a 30-minute break, it would be time for lunch. They have

since reduced her feeding time though she does not get enough nutrients.

The protein and calories that would help a normal person grow, instead help heal

Ervin’s wounds, says Mrs. Ervin. She says her daughter would have to eat twice as much

as anyone else her age to grow at a normal rate.

Ervin says the daily care she requires has helped her build a strong bond with her

family. Her 11 year-old brother Scott Ervin says they have a great relationship. Scott is

a regular boy though he too could have been born with EB. Both his parents have a rare

gene that when combined give their offspring a one in four chance of being born with the

disease.

Scott talks with enthusiasm about the Star Wars chess set he got his sister. He

says they don’t follow the rules and have made up their own game with the pieces.

When she’s not spending time with her family Ervin likes to watch Star Trek and

read the For Better or for Worse comic strips. She enjoys both because they deal with

tough issues that are not often touched upon in other media. Race relations, sexuality and

family relationships all find their way into their storylines.

Another of Ervin’s passions is the Internet. For the last two years, she has been a

member of the online blog community, Live Journal. She says the service has allowed

her to make new friends, and most importantly, to feel normal. Online, Ervin is just like

anyone else and no one can judge her appearance. She says the website has helped her to

keep going. “Here are people who will take me for what I say rather than what I look

like,” she adds.

Although Alice sometimes feels guilty for being a burden on her family her

mother says, she has helped her become a better person.

“Having a daughter like Alice has brought out the best in my husband and I,” she

says.