The truth behind little-known condition; Be informed.
Recessive Dystrophic Epidermolysis Bullosa or RDEB is an incurable condition caused by a lack of collagen protein in the skin.
It leaves skin incredibly fragile, prone to severe blistering and wounds at the slightest friction or knock, and affects sufferers both externally and internally.
How many people does it affect? Around 1,000 people live and suffer with RDEB in the UK.
What is day-to-day life like for people with RDEB? As well as treating the blisters, wounds and scarring caused by the condition, damage to the oesophagus can make swallowing and eating very painful, and some patients have to be fed through a tube.
RDEB can also affect the eyes, causing the protective layer of the cornea to come away, leaving the person blind until healing occurs.
Contractures, muscles or tendons that have remained too tight for too long, caused by scarring can reduce mobility and cause deformities, and many patients become wheelchair users by their teenage years.
For advice and support go to www.debra.co.uk