Mom opens up about son's rare condition that caused his skin to 'peel off in the bath' as a baby
A mother whose skin tears and blisters from writing, walking and eating was “devastated” when she discovered her son inherited the same condition.
Jennifer Taylor, 34, first showed signs of dystrophic epidermolysis bullosa (DEB) as a baby when her thumb blistered, turned purple and caused her fingernail to fall off.
The rare genetic health condition affects around 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, UK, said her feet would blister from walking, forcing her to wear slippers to school, and she even had blistering and a “web” of scar tissue in her oesophagus.
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As a teenager, she struggled with bullying and low self-esteem, unable to wear make-up or have her hair and nails done because of the irritation they caused.
In 2021, after giving birth to her son, William, now four, she discovered he had inherited DEB when a bath caused the skin on his leg to tear away the day before his newborn photoshoot when he just 10 days old.
Even holding William as a baby made the mom-of-one’s skin itch and blister, while he experienced many of the same symptoms, including painful mouth blisters caused by chewing.
Jennifer, who is married to 34-year-old husband Matthew, told PA Real Life: “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.”
How was Jennifer diagnosed with dystrophic epidermolysis bullosa?
Jennifer showed her first sign of DEB as a baby, when she had a blue and purple blister on her thumb, which led to her nail falling off.
Her father also had the condition, so her family recognised the signs, but she did not receive a formal diagnosis until years later.
As a child, 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 in London at the age of nine and was provided with additional dressings.
Then, at age 13, she underwent oesophageal dilatation after the condition caused blistering in her oesophagus, leading to a “web” of scar tissue forming.
Her son's diagnosis
When she was 16, she began dating her now-husband Matthew, who researched the condition immediately and has been her “rock” ever since.
At the age of 30, in 2021, after undergoing another oesophageal dilatation, Jennifer fell pregnant.
She experienced severe itching, which is common during pregnancy but, for Jennifer, scratching would cause significant blistering, and she proceeded to have a caesarean section to “minimise trauma” to both herself and her baby.
After giving birth to her son William on November 2, 2021, she said she required additional specialist dressings on the incision site and that it took several extra weeks to heal.
She said that after he was born, he had some small marks on his body, but she assumed this was “normal newborn skin”. Just 10 days after giving birth, she realised 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.”
How Jennifer cares for herself and William
Throughout William’s first few months, Jennifer had to adjust to managing both her own symptoms and his.
Day to day, she did countless loads of washing because of weeping blisters, bought seamless clothing to reduce irritation and used extra-soft blankets to avoid aggravating his skin.
She was able 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.
But her mother and husband were “very supportive” and able to “take over”. She added: “Even the heat from holding William would make my skin itch.”
Jennifer added that William now “understands” his condition and explains to others that he can get hurt easily, he is still a “typical four-year-old”, running around “all day”.
The help of DEBRA
William now uses a wheelchair, which was funded by DEBRA and Whizz Kidz, to help him get around on days out.
When heading away, the family must take enough bandages for both William and Jennifer, as many families with this condition often receive incorrect bandages or lower-quality dressings, due to a lack of knowledge about treating the condition.
In March 2026, DEBRA wrote to Government ministers in the UK to raise this issue and request meetings to discuss a way forward.
The goal is to secure a mandate that all GPs stick to the prescriptions recommended by clinical teams at the EB centres, and if they are unsure, then they must consult with the centres directly for advice and guidance.
Combined with the new training module, this mandate will hopefully help reduce unwanted prescription variations for all those impacted by EB.
Jennifer added, “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.
Danni King