Recessive Dystrophic Epidermolysis Bullosa (RDEB) is a rare genetic condition that causes the skin to tear and break down in blisters. A young woman named Madisyn Yuhas, from Pennsylvania, U.S., has come forward to talk about her life with this disease.
Madisyn, 18, was born without skin in her lower legs and has to be permanently wrapped in bandages from the neck down to protect her body. She requires 4-hour daily baths with bleach to control infections and follows a high-calorie diet to help her skin recover faster from its wounds.
Due to the fragility of her skin, even the lightest friction can cause it to come off. Simple acts like being hugged or cuddled are prohibited for her, as they could shred her skin down to the muscle. This condition has also affected her weight, with a body mass index (BMI) score of 14, which is below the healthy range of 18 to 25 according to the World Health Organisation.
Madisyn's mother, Mary, a 46-year-old heart specialist, emphasized the importance of getting fluids and medications into her daughter, saying, "if we can't get fluids or meds into her she has to be admitted to hospital. The calories are vital to helping her fight off infection and keeping her body from shutting down."
RDEB affects one in 20,000 people and worsens over time. Madisyn's condition has progressed to the point where she is almost always in a wheelchair, having previously been able to dance as a child. There is currently no cure for RDEB, making her daily life a constant struggle.
The recovered account cited reporting by Tuko.
