Research studies, DebRA

Epidermolysis bullosa (EB) is a rare genetic disorder which causes the skin to blister and shear at the slightest touch, or even spontaneously.

There are at least 5,000 people living with this devastating condition in the UK.  It varies in severity, from blistering on the hands and feet  to a person's whole body being painfully affected.

It's a condition that's not just confined to outside of the body.  It can also cause blisters in the mouth and throat.

Hollie with her mum, Leah

Hollie is four years old.  She didn't show any obvious signs of the condition when she was born.  But in a matter of days she had spots on her tongue and blisters on her toes. 

Specially trained nurses travelled to see the family in West Yorkshire and taught Leah and Adam, Hollie's parents, how to pick her up and hold her.

Hollie is bandaged from head to toe all the time.  Her dressings need to be changed at least every three days, or more frequently if she's bumped herself while she's been playing. 

Life expectancy for children like Hollie can be into their 30s or 40s and Leah is very optimistic and takes each day as it comes.

Jeans for Genes is awarding DebRA a grant to support a clinical researcher at St John's Institute of Dermatology in London.  They'll be looking at how patients can be offered the best possible care at the in and out patient departments at the National EB Service at St Thomas' Hospital in London.

The researcher will also look at how a patient's genes affect the severity of their condition.