Jennifer Taylor, 34, has a rare genetic condition09:04, 05 Jun 2026A 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.‌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 also known as 'butterfly skin' as it causes the skin to become as fragile as a butterfly's wings. Growing up, Jennifer, from Prescot, Merseyside, said her feet would blister from walking, leaving her with no choice but to wear slippers to school, and she even suffered blistering and a "web" of scar tissue in her oesophagus.‌As a teenager, she battled bullying and low self-esteem, unable to wear makeup or have her hair and nails done due to the irritation they caused. In 2021, after giving birth to her son, William, now four, Jennifer found out he had inherited DEB when a bath caused the skin on his leg to tear away the day before his newborn photoshoot.Even cradling William as a baby caused Jennifer's skin to itch and blister, while he suffered many of the same symptoms, including painful mouth blisters brought on by chewing.‌Jennifer, who is married to Matthew, 34, 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. We have to change our dressings multiple times a day, constantly – I change William's 10 times a day sometimes."Even cooking, I might burn myself or some steam gets on me, and that'll make my skin blister and I'll be in pain for weeks – it's the same with housework, it causes me so much pain just if I knock myself slightly."Jennifer displayed her first symptom of DEB as a baby, when a blue and purple blister appeared on her thumb, causing her nail to fall off. Her father also suffered from the condition, meaning her family recognised the signs straight away, though a formal diagnosis didn't come until years later. Growing up, she said her skin – particularly on her hands, elbows and knees – would blister and tear "constantly".‌She explained: "I'd get blisters on my feet just from walking to school, so I often wore slippers or trainers to school. The skin on my hands would get sore and bleed and blister from writing – someone else had to write for me."I got bullied a lot, but I had a small group of friends around me. On sports day I had to sit to one side, and I just watched everyone else play at play times – if I went outside I'd hurt myself."Jennifer was formally diagnosed with DEB at Great Ormond Street Hospital aged nine and was given specialist dressings. At 13, she underwent oesophageal dilatation after the condition caused blistering in her oesophagus, resulting in a "web" of scar tissue developing.‌As she entered her teenage years and transitioned to secondary school, she kept a "tight-knit" circle of friends, yet the bullying persisted. She grew increasingly self-conscious – by this stage, she had lost many of her fingernails due to blistering and was unable to have her hair styled because of her sensitive scalp.She revealed that applying makeup would leave her skin red, blotchy and dry, resembling severe eczema, while perfume would trigger a "flare up". Jennifer explained she frequently had to remain at home due to the pain, which took a serious toll on her mental health.‌She added: "I felt really alone, like I was the only teenager going through it. I was really low for a lot of my teenage years."At 16, she began a relationship with her now-husband Matthew – who she says researched the condition straight away and has been her "rock" ever since. Aged 30, in 2021, following another oesophageal dilatation, Jennifer discovered she was pregnant.She suffered from intense itching, which is common during pregnancy, but for Jennifer, scratching would trigger severe blistering. Jennifer said she had a caesarean section to "minimise trauma" to both herself and her baby.‌After welcoming her son William on November 2, 2021, she revealed she needed additional specialist dressings on the incision site and that it took several extra weeks to heal. Following his birth, he had some small marks on his body, which she put down to "normal newborn skin". Just 10 days after giving birth, she discovered that William also had DEB.Jennifer said: "We thought we'd bathe him because it was the day before his newborn baby photoshoot and we were getting him registered the day after. I remember putting him in the bath, in a plastic baby bath with a seat, and he started screaming. He kicked his leg down and it took all the skin from his knee down to his ankle off, it just peeled off, and I just knew then."Jennifer applied dressings and plasters to his skin and, the following morning, contacted her nurses at Solihull Hospital, who referred her to Birmingham Children's Hospital and arranged a home visit a few days later.‌She added: "When we took him to the photoshoot, we asked for them to Photoshop the plasters out, it sounds awful, but we wanted him picture perfect, because I knew what was to come."When the nurses arrived for the home visit, they examined him, provided dressings and ensured he "was in the system" to receive support. In mid-November 2021, William received a formal diagnosis of DEB. "It felt awful to know he had it because of me, I was devastated," she said. During William's first few months, Jennifer had to adapt to managing both her own symptoms and his.‌On a daily basis, she ran countless washing loads due to weeping blisters, purchased seamless clothing to minimise irritation and used ultra-soft blankets to avoid aggravating his skin. She managed to breastfeed for six weeks, using additional shields and creams to help "get her through it".Jennifer said she also had to be "very careful" when changing his nappy and avoid knocking herself on anything, as it would cause her skin to become even more inflamed. Her mother and husband were, however, "very supportive" and able to "take over".She added: "Even the heat from holding William would make my skin itch."‌As he grew older, William developed blistering inside his mouth simply from chewing and teething. On top of this, in January 2024, Jennifer was diagnosed with a benign but aggressive "giant cell" tumour in her foot and heel.She is currently taking chemotherapy medication to slow down any growth, and frequently uses a wheelchair to help her "get around". When William started nursery in September 2024, DEBRA – a national charity and patient support organisation for people living with epidermolysis bullosa – visited the school and briefed staff about William's condition, explaining how it affects him and setting out the precautions that need to be taken.Jennifer explained that although William "understands" his condition and tells others that he can get hurt easily, he remains a "typical four-year-old", running around "all day". Jennifer admitted she is "terrified" about him starting primary school, as she is desperate to shield him from the same bullying she suffered.‌Nevertheless, she remains optimistic that early education, particularly with DEBRA's support, will help reduce this. William now uses a wheelchair, fitted with Spider-Man wheels, funded by DEBRA and Whizz Kidz, to assist him on days out.The family recently made a trip to Disney World in Florida, where he relied on the wheelchair throughout their visit. On the flight, they were required to bring an entire suitcase packed with bandages for both William and Jennifer.Many families living with epidermolysis bullosa (EB) frequently receive incorrect bandages or inferior dressings due to a lack of understanding about how to treat the condition. As a result, in March 2026, DEBRA wrote to Government ministers to highlight this problem and request meetings to explore a way forward.Article continues belowThe objective is to obtain a mandate ensuring all GPs adhere to the prescriptions recommended by clinical teams at the EB centres, and if uncertain, they must liaise directly with the centres for advice and guidance. It is anticipated that, combined with the new training module, this mandate will help minimise unwanted prescription variations for all those affected by EB. Jennifer said she wishes there was greater awareness of the condition.She said: "It's hard because we don't always look like there's anything wrong – people don't realise what it's like day-to-day, the pain, the dressing changes, it's really tough!"For more information and support, visit www.debra.org.uk