Yahoo Lifestyle 20-Year-Old with 'Butterfly' Skin Disease Is Striving for Independence: 'You Just Gotta Power Through' (Exclusive)
In 2017, PEOPLE spoke to Brandon Joseph, who is living with the rare disease epidermolysis bullosa. While many patients die during infancy, Joseph is now thriving at 20
Andrea Pett-Joseph
Brandon Joseph with his parents Paul and AndreaBrandon Joseph was born with epidermolysis bullosa (EB), a rare and incurable genetic condition that causes painful blisters on the skin and internal organs
PEOPLE first talked to him when he was 13; now 20, he’s gaining more independence and learning to navigate his health challenges on his own
His parents, Andrea Andrea Pett-Joseph and Paul Joseph, continue to support his journey as well as raise awareness and funds for EB through the Epidermolysis Bullosa Medical Research Foundation
In 2017, PEOPLE shared the story of Brandon Joseph, who was born with epidermolysis bullosa (EB), a rare and incurable genetic condition that causes painful blisters on the skin and internal organs. At the time he was 13 years old and only able to eat soft foods. He talked about the pain he experienced doing simple tasks like brushing his teeth and putting on a T-shirt. Now 20 years old, Brandon is opening up to PEOPLE again, this time about how he is learning to navigate the world on his own, independent of his parents, amid his health challenges.
Every morning, Brandon Joseph changes his bandages to protect the open wounds that cover his body — something he’s learned to do by himself over the years while living with a debilitating disorder.
He was born with epidermolysis bullosa (EB), often called the "butterfly disease" because the condition leaves the skin as fragile as a butterfly’s wings. The genetic disorder causes painful blisters on the skin and internal organs from even the slightest touch or friction. The result is disfiguring scars and often, early death from skin cancer. Life expectancy for EB ranges from early infancy to just 30 years old.
“Every day there's something new,” the Los Angeles native tells PEOPLE. “Some days my legs are very bad and my knees hurt, but then other days I can walk perfectly fine. Sometimes I can get a corneal tear and then I won't be able to see for the day, or my throat will hurt and I won't be able to eat.”
“There's a lot of challenges. Nothing is certain and everything changes day to day, so it's really hard because you don't know what you'll face that day.” he continues. “It gets tough because you just want to hang out with your friends, but you can't. You want to do certain activities, but you can't.”
Andrea Pett-Joseph
Brandon Joseph with his parents Paul and AndreaNever miss a story — sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories.
Brandon says it’s extremely important to him to be independent and take care of himself, understanding that he won’t always have his parents to help him stay healthy. Although it can be difficult, over the years he’s adapted when necessary, noting that he is able to prepare what he needs every morning for school — on his own.
“It can be really challenging, but you just gotta power through it,” he says.
As Brandon learns to adapt, his parents — Andrea Pett-Joseph and Paul Joseph — are also adjusting to stepping back. The couple has spent over 20 years caring for and protecting their son, and they say giving him more independence can be hard.
For example, Paul explains, one challenge is that Brandon has difficulty walking long distances and should avoid crowded areas where he might get bumped or jostled. But he says Brandon has become capable and cognizant of realising what he’s able to do with or without assistance.
“He's always had great self-awareness,” Andrea adds. “Just kind of knowing when something is comfortable for you and when it's not comfortable to sort of back off. He knows his limitations, but he’s certainly willing to push himself within those limitations."
Brandon explains further: “I always prefer to be able to do stuff on my own, but there's obviously limitations as simple as opening a water bottle I need help with,” he says. “So it just gets kind of frustrating when I need help because I don't like depending on people, but unfortunately I just have to deal with that. I do as much as I can by myself, but I'm always willing to ask for help.”
Andrea Pett-Joseph
Brandon Jospeh with his parents Paul and Andrea at his high school graduationThe PEOPLE Puzzler crossword is here! How quickly can you solve it? Play now!
Andrea and Paul say they’re proud of Brandon’s milestones, specifically his graduating from high school and going off to college. He’s currently a student at Loyola Marymount University.
The next step, Andrea says, is preparing him to move out and live on his own.
Paul admits that because he’s watching his son grow up in real time, seeing progress sometimes “feels like watching paint dry.”
“It's a challenge. No one wants to see their child struggle, but to his credit, you can see he's a pretty tough kid,” he adds. “We make it work, we adapt it.”
Andrea says she and Paul recently took a trip and were thrilled that Brandon could take care of himself independently. The family developed a system to have someone assist with anything he might have needed and it “worked out great.”
“We had to make sure there was someone here to just be backup. Not wanting him to feel like he was being babysat at 20 years old, but that there was a plan in place if you needed it,” Andrea explains. “It's just sort of here as a support system, whether he uses it or not.”
One reason Brandon has improved so much is because he’s participated in clinical trials for EB treatments. “It gave me some hope because I noticed it working on my own body,” he shares.
Andrea admits that although the family has dealt with this disease for years, it’s actually gotten harder to navigate.
“When it's a younger child, you're caught up a little bit more in the baby stuff, the activities, pre-K, all that. But as they get older, you realize that it's a human being growing up who's dealing with all this,” she explains. “The emotional sort of pull and tug at you is different watching him as an adult.”
“When he was younger, I think he understood it but didn't fully grasp it because you're just a fun, happy little toddler. But as you get older, it certainly has more of an emotional impact and as parents, it's harder to watch,” she adds. “It's hard for any parent to see their child go through all this.”
Related: Girl, 12, Is 'Constantly in Pain' Due to Rare Disease That Causes Her Skin to Rip and Blister
That’s mainly why Andrea and Paul have dedicated so many years to supporting the Epidermolysis Bullosa Medical Research Foundation.
The couple launched a Los Angeles chapter of the EBMRF in 2005, and took over day-to-day operations of the foundation later that year. Nearly 20 years later, they’re most recognized for their annual star-studded Rock4EB! concert, which raises funds and awareness for EB.
On September 21, the family will host Pink and singer-songwriter Dallas Green, among other stars, at this year’s event in Malibu, California. More information about EBMRF as well as tickets to this year’s Rock4EB! event can be found here.
Related: 6-Year-Old Enjoys Fundraiser for Her Rare Disease: I Wore 'a Unicorn Onesie and Butterfly Wings!'
Andrea says she can’t believe it’s been two decades, assuring their work with the foundation is far from over.
“Sometimes you run a foundation and you're in it for the cause, but you're brought to the table by different reasons. And for us, obviously it's very personal,” she tells PEOPLE. “So we're here 'till we figure it out. And certainly the progress that we've made, we're really happy about.”
“We always joke with all the researchers and say, ‘We'd love nothing more than for you guys to put us out of business.’” Paul quips. “But yeah, we're thrilled.”
“We are never going to have enough dollars to fund something from inception to actual public use,” he continues. “But the idea that we can hand off the baton and get other pharmaceutical companies involved and other foundations, and more research, that's really the multiplier effect where we felt we added some value.”
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