A mother whose skin tears and blisters from writing, walking, and eating was devastated when she discovered her son had inherited the same condition after the skin on his leg peeled off during a bath at just 10 days old.
Living with Dystrophic Epidermolysis Bullosa
Jennifer Taylor, 34, first displayed symptoms of dystrophic epidermolysis bullosa (DEB) as a baby when her thumb blistered, turned purple, and caused her fingernail to fall off. The rare genetic condition affects at least 5,000 people in the UK and is known as 'butterfly skin' because it makes skin as fragile as a butterfly's wings.
Growing up in Prescot, Merseyside, Jennifer's feet would blister from walking, forcing her to wear slippers to school. She also suffered blistering and a web of scar tissue in her oesophagus. As a teenager, she endured bullying and low self-esteem, unable to wear makeup or style her hair due to irritation.
Diagnosis and Family History
Jennifer's father had the condition, so her family recognised the signs early. However, a formal diagnosis did not come until she was nine, at Great Ormond Street Hospital. At 13, she underwent oesophageal dilatation after blistering caused scar tissue in her oesophagus.
She said: 'I'd get blisters on my feet just from walking to school, so I often wore slippers or trainers. The skin on my hands would get sore and bleed from writing – someone else had to write for me.' Bullying persisted, and she often stayed home due to pain, affecting her mental health.
Motherhood and Inherited Condition
In 2021, Jennifer became pregnant. She had a caesarean section to minimise trauma. Her son William was born on November 2, 2021. Ten days later, while bathing him before a newborn photoshoot, his skin peeled off from knee to ankle. Jennifer knew immediately he had DEB.
She said: 'It felt awful to know he had it because of me, I was devastated.' William was formally diagnosed in mid-November 2021. Even cradling him caused Jennifer's skin to itch and blister. William developed mouth blisters from chewing and teething.
Daily Challenges and Support
Jennifer changes dressings multiple times daily, sometimes 10 times for William. Cooking, housework, or minor bumps cause painful blisters. The family uses seamless clothing and ultra-soft blankets to minimise irritation. In January 2024, Jennifer was diagnosed with a benign giant cell tumour in her foot, requiring chemotherapy and a wheelchair.
DEBRA, a charity supporting those with epidermolysis bullosa, visited William's nursery to educate staff. Jennifer worries about him starting primary school, fearing bullying. However, William remains a typical four-year-old, using a wheelchair with Spider-Man wheels for outings.
Many families receive incorrect bandages due to lack of understanding. In March 2026, DEBRA wrote to Government ministers to address this, aiming for a mandate ensuring GPs follow prescriptions from EB centres.
Jennifer said: 'It's hard because we don't always look like there's anything wrong – people don't realise the pain and dressing changes. It's really tough!'
