Thirteen-year-old Naomi Fields is one of only 5,000 people in the UK diagnosed with epidermolysis bullosa (EB), a rare genetic disorder that makes the skin painfully fragile and prone to blistering at the slightest contact. Known as the butterfly skin condition, EB currently has no cure.
Naomi’s mother, Carly Fields, shared their journey to encourage parents to seek early testing and connect with supportive communities. “Ask your doctor for a blood test – it’s that simple,” Carly told NeedToKnow. “It can open doors to vital support and resources. That’s how we get through each day.”
Carly candidly shared the fears she has for Naomi’s future. “I worry she won’t be able to live the full life she deserves. She faces a world that isn’t built for people like her, and she will need immense strength to endure the constant pain.”
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Diagnosed when Naomi was a toddler, Carly recalls the early signs. “When Naomi started crawling, I noticed blisters forming on her fingers. At first, I thought it was an allergic reaction or a burn, but the blisters just kept growing until her finger was one large blister. It was agonizing to watch.”
Doctors initially suspected eczema or psoriasis. But trusting her instincts, Carly pushed for a dermatologist’s evaluation, which confirmed the EB diagnosis.
Research introduced Carly to unsettling images showing the severity of EB. Despite there being no cure, Carly and Naomi manage symptoms with constant care and pain management. “We have a drawer filled with countless dressings and creams. None cure it, but Naomi is incredibly resilient and fortunate to have a strong support network.”
EB has reshaped daily life for the Fields family. Even changes in temperature and humidity trigger flare-ups. “Sports are mostly off the table. Family holidays in the sun are impossible. On hot days, staying inside and keeping Naomi cool is our priority,” Carly explains. “Heatwaves fill me with dread.”
On difficult days, Naomi relies on a wheelchair because moving causes unbearable pain. “It feels like a constant itch that won’t go away,” Naomi describes. “My skin is so tender, I have to avoid moving altogether.”
Carly admits the emotional toll is heavy. “It breaks my heart to know how much this condition alters Naomi’s life. As a baby, enduring painful treatments was heartbreaking. As she grows, we face tough choices balancing protection and independence. No parent wants to see their child suffer, but we learn and adapt together every day.”
Through it all, Naomi and her family strive to find strength in their resilience, raising awareness about EB in hopes that others receive early diagnosis and the support needed to navigate life with this challenging condition.