What is Epidermolysis Bullosa?
Epidermolysis Bullosa is a genetic skin blistering condition that affects over 500,000 people around the world, but very few people have heard of it. Those who have realise what a devastating impact it has on sufferers and their families. It is unrelenting in its pain and unrelenting in the distress it causes.
Why haven’t you heard of it?
Because there is no treatment and no cure and as a relatively rare condition it has been easy to ignore.
Groundbreaking research is on the point of delivering treatments and possibly a cure. The work to get there will help people with many other genetic conditions.
For more information about EB click a heading below.
It affects both sexes and every racial and ethnic background equally.
EB results from a genetic mutation in one of the genes that have been found to cause the disorder.
There are four main types – Simplex/Junctional/Dystrophic/Kindler
Milder forms of EB cause extensive pain and blistering but do not disfigure and are not lethal.
Severe forms cause death in the first few months of life (Herlitz Junctional) or mitten deformities, extensive skin loss (like burns), anaemia, difficulty swallowing, microstomia (small mouth opening), corneal scarring (sometimes blindness), malnourishment, and eventual death from skin cancer usually between the ages of 20-30 years.
Constant pain. With open wounds like burns all over the body sufferers never have a moment’s rest from pain.
There are a number of early phase Clinical Trials taking place NOW across the world aimed at treating EB – locally and for the whole body.
These are looking at :
1) Stem cell
2) Gene Therapy
We are awaiting :
3) Protein therapy trial
4) Drug therapy trial
Research in the UK and US funded by Cure EB
FACT that you need to know about Cure EB:
100% OF YOUR DONATIONS GO TO RESEARCH
We are proud of this fact.
Please see our Research pages to learn more
What is EB Awareness Week?
EB Awareness Week is an annual event to raise awareness of the condition. It’s the first step in finding a cure for the 5,000 people in the UK affected by it and the 500,000 people worldwide. It takes place from 25th-31st October every year.
How you can help
Lots of ways!
Playing #EBpop in the summer
Joining our Butterfly Brunch Club and hosting a brunch
Taking part in our Butterfly Run
Take a look at our Events page for more ideas!
Of course, if you’d like to make a donation, you can find out how here.