Teen's skin blister disease stops her from walking

Naomi uses a wheelchair when her condition flares up

A 13-year-old girl has spoken out about her rare skin condition and the "awful pain" it causes to raise awareness.

Naomi, from Stroud in Gloucestershire, has epidermolysis bullosa simplex (EB), which causes painful blisters on the hands and feet.

On particularly bad days, she is unable to write, put her shoes on or walk, relying on a wheelchair instead.

"Its two main causes are heat and friction, so it gets a bit better in winter, but in summer it's really, really bad," she said.

To prevent pain and more blisters, Naomi follows a daily routine of lancing her feet blisters and dressing them.

Her mother, Carly, first noticed a problem when she developed blisters on her hands as she learned to crawl.

"We thought, this isn't right, this is different to a normal kind of reaction to something, so we really pushed to get through to a dermatologist who then, luckily, had had training in EB, but had never seen it before," Carly said.

Further tests confirmed that Naomi, then just six months old, had EB.

The condition is often misdiagnosed as other skin problems such as eczema or psoriasis.

About 5,000 are thought to have EB in the UK. It is also known as butterfly skin, as the skin is fragile like butterfly wings, blistering at the slightest touch. There is currently no cure.

Naomi's mother is now head of a patient support group for Debra, an EB charity carrying out research into the disease.

Recalling a woman who was diagnosed in her 50s, Carly said: "She's lived in pain for all that time, not knowing what it is, being told 'you have funny feet, just deal with it'.

"That's heartbreaking really, that people are told that kind of thing and aren't given the help they could get if they just knew."

But she added: "[The patients] are so positive in the face of adversity and I'm amazed by them every day."