This page from Great Ormond Street Hospital (GOSH) explains about severe recessive dystrophic epidermolysis bullosa and how it can be managed. It also contains suggestions for making everyday life more comfortable.
What causes dystrophic EB (DEB)?
How is EB diagnosed?
Is there a cure?
How serious is RDEB?
Types of RDEB
Recessive dystrophic EB – severe (RDEB-S)
Recessive dystrophic EB –intermediate
Dystrophic EB pruriginosa (DEB-PR)
Recessive dystrophic EB inversa (RDEB-I)
How is RDEB managed?
Nappy area care
- Try to keep the environmental temperature cool, using fans (directed away from the face to avoid drying the eyes or use a non-buffering Dyson® fan) or an air conditioning unit.
- Dry skin tends to be itchier, so apply a bland moisturiser as suggested by your EB specialist.