Fight EB: Beata's story

#FightEB so Beata's son can have a better future

When you're expecting your first child, people always say your life will change forever.

Beata, who worked as a nurse at a London hospital, didn't realise how true this was until her son, James, was born.

The skin was missing from both of James' legs.

'He was in so much pain. He couldn't feed. He was crying so much and we couldn't console him,' Beata remembers.

Doctors confirmed that James had Epidermolysis Bullosa (EB) - a potentially fatal skin condition that causes constant pain due to unstoppable internal and external blistering. In spite of her medical training, Beata knew nothing about EB.

The following weeks passed in a whirlwind of shock.

With support from specialist EB nurses, Beata learned how to look after his skin.

'I learned to do his dressings and manage his medications. I'm a nurse so some of it comes naturally to me, but it's still a struggle. Eventually, we were able to take him home,' she says.

EB affects everything in their day-to-day life.

Even changing his dressings can take up to three hours. Eating is difficult and constant blistering means James' eyes are always sore. As soon as he's passed one hurdle, Beata knows there'll be another one waiting for him.

'More healthcare professionals need to know about EB so they can help people like James. Mostly I think I'm coping ok, but some days you just want to cry your eyes out. I just hope he grows up strong enough to cope with whatever the future has in store for him.'

Beata's determined to make sure James has the best possible quality of life. Help Beata #FightEB and give now.

Your gift could help provide care and support to improve the quality of life for the entire EB Community, including funding extra nursing hours and training sessions for healthcare professionals.