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A 13-year-old girl is sharing her experience with a rare skin condition that causes “awful pain.” Naomi, from Stroud in Gloucestershire, lives with epidermolysis bullosa simplex (EB), a condition that results in painful blisters on her hands and feet.
What is epidermolysis bullosa simplex? EB is a genetic disorder that causes skin to become extremely fragile, blistering and tearing at the slightest touch, earning it the nickname “butterfly skin.” The two primary triggers for Naomi’s blisters are heat and friction, making summers particularly challenging.
On difficult days, Naomi finds it impossible to write, put on her shoes, or walk, often needing a wheelchair for mobility. Her daily routine includes the careful lancing and dressing of blisters to manage the pain and prevent further outbreaks.
Naomi’s mother, Carly, first noticed something was wrong when Naomi developed blisters on her hands as a baby learning to crawl. Concerned by the unusual reaction, Carly sought medical advice. After a lengthy process, they consulted a dermatologist who, though trained in EB, had never personally encountered the condition.
Further testing confirmed that Naomi had EB when she was just six months old. The condition is often misdiagnosed, frequently mistaken for other skin ailments like eczema or psoriasis.
In the UK, it’s estimated that around 5,000 people have EB, and there is currently no known cure. Carly is now a leading figure in a patient support group for Debra, a charity dedicated to funding research into the disease.
Did you know? EB is also known as “butterfly skin” because the skin is as fragile as butterfly wings.
Carly shared the story of a woman diagnosed with EB in her 50s, who had lived with undiagnosed pain for decades, being told to “just deal with it.” Carly expressed how heartbreaking it is that individuals suffer without the proper diagnosis and support they could receive.
Despite the challenges, Carly remains amazed by the resilience of those living with EB, noting their incredible positivity in the face of adversity.
