Portrait photo of Fazeel Irfan, who lives with RDEB

A recent study, funded by DEBRA, has clarified that itch is a common symptom amongst patients with recessive dystrophic epidermolysis bullosa (RDEB) and that currently available treatments are generally inadequate at managing it.

We received very similar feedback from our recent EB insight study and this latest study reconfirms the need for effective drug treatments for patients with all types of EB, including RDEB, that address the key symptoms of pain, blistering, and itch.

The in-depth study, which included data on 50 people with RDEB — from children as young as 8 to adults older than 40, showed that only two participants reported no notable itching, and that itch severity and distress were high across all RDEB groups.

The study also revealed that the majority of RDEB patients interviewed reported that itching was most problematic at night, and many said it tended to worsen when they were stressed or in a hot environment.

Whilst the study may not reveal anything groundbreaking it does reinforce the need for effective drug treatments that positively improve both pain and itch, which is what we regularly hear from our members including Fazeel:

The worst thing about EB is the pain. The pain is incredible, it is everyday pain that does not go away. Then there’s the itch. Some days there is no itch at all and sometimes I have days where I just can’t stop itching.

Fazeel, 17, has RDEB

Securing effective drug treatments for all types of EB is at the centre of our research strategy. Our first clinical trial testing the psoriasis drug (apremilast), which we believe could positively improve outcomes such as blistering, pain, itch, and overall quality of life for patients with severe epidermolysis bullosa simplex (EBS) will start before the end of the year, and we hope to announce further clinical trials early in 2024.

To read the full study please visit Itch in recessive dystrophic epidermolysis bullosa: findings of PEBLES.