A mother whose skin tears and blisters from everyday activities like writing, walking, and eating has spoken of her devastation after her son inherited the same rare condition. Jennifer Taylor, 34, from Prescot, UK, has dystrophic epidermolysis bullosa (DEB), a genetic disorder affecting around 5,000 people in the UK, often called 'butterfly skin' because the skin is as fragile as a butterfly's wings.
Jennifer first showed signs of DEB as a baby when her thumb blistered and turned purple, causing her fingernail to fall off. Growing up, her feet blistered from walking, forcing her to wear slippers to school, and she developed blistering and scar tissue in her oesophagus. As a teenager, she faced bullying and low self-esteem, unable to wear make-up or style her hair and nails due to irritation.
In 2021, after giving birth to her son William, now four, Jennifer discovered he had inherited DEB when a bath caused the skin on his leg to tear away when he was just 10 days old. Even holding William as a baby caused Jennifer's skin to itch and blister, while he experienced painful mouth blisters from chewing. Jennifer and her husband Matthew, 34, change dressings multiple times daily, sometimes up to ten times for William.
Jennifer said: 'We wish that even doctors knew more about it. They often don’t give us enough dressings, they don’t realise how much we need.' She added that everyday tasks like cooking or housework can cause painful blisters that last for weeks. Jennifer was formally diagnosed at Great Ormond Street Hospital at age nine and underwent oesophageal dilatation at 13. She now manages both her own symptoms and William's, using seamless clothing and extra-soft blankets to reduce irritation.
