Rare Skin Condition: Teen Raises Awareness of Painful Epidermolysis Bullosa

13-year-Old Speaks out About Painful Skin Condition to Raise Awareness

A 13-year-old girl named Naomi, from Stroud in Gloucestershire, is sharing her experience with epidermolysis bullosa simplex (EB), a rare condition that causes severe blistering on her hands and feet, to bring attention to its impact.

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Naomi’s condition, EB, leads to painful blisters that can make it unfeasible for her to perform everyday activities like writing, putting on shoes, or walking on particularly bad days, necessitating the use of a wheelchair.

She explained that heat and friction are the primary triggers for her blisters, making the condition significantly worse during the summer months compared to winter.

To manage her condition and prevent further blistering, Naomi adheres to a daily regimen that includes lancing her foot blisters and dressing them.

Her mother, Carly, first recognized that Naomi’s skin issues were unusual when blisters appeared on her hands as she began to crawl. After seeking medical advice, a dermatologist, who had some training in EB but had never encountered a case before, confirmed Naomi’s diagnosis when she was just six months old.

EB is frequently enough misdiagnosed as other skin ailments such as eczema or psoriasis. The condition, also known as “butterfly skin” due to the extreme fragility of the skin, which blisters at the slightest touch, affects an estimated 5,000 people in the UK. currently, there is no known cure for EB.

Carly is now the head of a patient support group for Debra, a charity dedicated to researching EB. She shared an anecdote about a woman diagnosed with EB in her 50s, who had endured years of undiagnosed pain, being told her foot issues were something she simply had to “deal with.” carly emphasized the heartbreak of such experiences and the importance of proper diagnosis and support.

Despite the challenges, Carly expressed her admiration for the resilience and positivity of EB patients, stating, “The patients are so positive in the face of adversity and I’m amazed by them every day.”