Thirteen-year-old Naomi Fields is one of just 5,000 people in the UK living with epidermolysis bullosa (EB), a rare genetic condition that causes the skin to be incredibly fragile and prone to tearing at the slightest touch. The condition, often called “butterfly skin,” has no cure, and managing it requires constant care and vigilance.
Naomi’s mother, Carly Fields, recounts the early days of uncertainty and fear. “When Naomi began crawling, blisters appeared on her fingers and thumbs. At first, I thought it was an allergic reaction or a burn,” Carly said. “But the blisters worsened, and by the time we saw a doctor, her finger was one large blister. I knew this wasn’t normal and that she must be in pain.”
Doctors initially suspected eczema or psoriasis, but Carly insisted on a dermatologist referral. That’s when Naomi was finally diagnosed with EB. Discovering the diagnosis brought a mix of relief and terror. “Seeing the images of what EB can do was horrific and something I can’t forget,” Carly admits.
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Living with EB means Naomi and her family must navigate a world that isn’t designed for her needs. Anything from temperature changes to humidity can worsen her symptoms. “Sports are mostly out of the picture,” Carly shares. “We can’t take traditional family holidays in the sun. On hot days, we often stay home to protect her.”
Naomi experiences painful blistering, making even simple tasks impossible at times. “It’s like a constant itch that never goes away. My skin is tender to the touch, so the best thing I can do is to stay still,” she explains.
While there is no cure, Carly manages Naomi’s pain and symptoms with numerous dressings and creams, stored carefully in a treatment drawer at home. “Nothing fixes it, but Naomi is incredibly resilient and surrounded by a strong support network,” Carly says.
Despite the challenges, Carly urges other parents to advocate for testing if they notice unusual skin symptoms in their children. “Ask your doctor for a blood test — it’s simple and might connect you to a supportive community. That connection has helped us every day.”
Carly admits the emotional toll is heavy. “It breaks my heart to think about how EB will affect Naomi’s future. We’ve had to adapt constantly—from worrying about painful treatments as a baby, to limiting her movement as a toddler, to now allowing her independence even when it might cause more pain.”
Through it all, Naomi and her family continue to fight a daily battle against this heartbreaking condition, hoping that increased awareness can lead to better support and, one day, a cure.