Rachel Buyle lives with Epidermolysis Bullosa, a condition that causes skin to become fragile and easily blister from minor injury, heat, rubbing or scratching

A woman with an extremely rare skin disorder spends multiple days a week in a “bandage room.”

Rachel Buyle lives with Epidermolysis Bullosa, also known as EB, a condition that causes skin to become fragile and easily blister from minor injury, heat, rubbing or scratching, according to the Mayo Clinic.

To help prevent blisters from forming, Rachel, 36, spends six hours a day, three times per week, in her bandage room, WXYZ reported.

“It’s routine. It’s not always easy,” the woman, currently living in St. Clair Shores, Mich., told the local news outlet.

Rachel had her left arm, from just below her elbow, amputated last summer to prevent the spread of skin cancer — a common illness caused by EB.

Her husband, Stephen Buyle, told WXYZ that Rachel still remains positive, despite the challenges brought about by her health condition.

“I love her independence, I love her resilience, I love her resourcefulness,” Stephen told the local outlet.

“Obviously, she has all these issues, but she’s never pessimistic about it, never down about it, never depressed about it, never lets her condition control her fate or her life,” he added.

Rachel works as a substitute teacher during the school year, and in the summer, she drives for Lyft, WXYZ reported.

She often uses a wheelchair to move around more easily, and she currently wants to buy a new, more advanced version. “I just want a smooth ride,” Rachel told the outlet. “You don’t even feel like you’re riding in a wheelchair. It kinda just glides over, feels like you’re just walking.”

However, Rachel told WXYZ that the tractor-style power wheelchair she wants isn’t covered by her insurance, which classifies the chair as a recreational vehicle, rather than a medical one.

“They want me to get a chair that, like, the footrest moves out, can lean back. I don’t need all that,” Rachel said.

Rachel’s mother, Susan Schneider, has set up a GoFundMe to help her daughter raise funds to get the improved wheelchair.

“Everyday ordinary things can tear her skin, her mouth, her esophagus, and her eyes, causing painful wounds. Eating, sleeping, walking, things that we take for granted, can cause significant damage to her body,” Schneider wrote in fundraising page’s description, sharing more insight into her daughter’s condition. “Most of Rachel’s body is wrapped in dressings to keep her skin on, and to prevent trauma, and to cover wounds while they heal.”

“Overtime, this repeating cycle of injury, healing [and reinjury] has led to issues with mobility. Rachel currently has a power wheelchair that no longer meets her needs. Despite having Epidermolysis Bullosa, Rachel is very adventurous and does many things outdoors,” she continued.

Rachel’s husband told WXYZ that getting a new wheelchair “would just change our world, and how we would get to explore the world together.”

Source: https://people.com/woman-with-rare-skin-disorder-spends-3-days-a-week-in-bandage-room-for-hours-12022455