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Epidermolysis bullosa (epi-dermo-lie-sis bull-owe-sa, also called EB) is a group of rare genetic diseases that cause very fragile skin. Because the skin is so fragile, it can be injured very easily (even from heat, rubbing or a bump) and result in blisters and wounds.
Children with EB are sometimes referred to as butterfly children because their skin is as fragile as a butterfly's wings.
Human skin has layers, which are normally held together with a protein that acts like a glue. EB happens when these proteins are missing or reduced, which results in damage and causes skin breakdown.
EB is rare, and it is estimated that less than one in 20,000 children has some form of EB. Often there is a family history of the condition.
Currently, there is no cure for EB. Many types are well controlled and many patients with EB lead normal lives. Unfortunately, there are several rare types that can cause significant pain and disease.
There are many different types of EB, and it ranges from a mild to a severe disease. Four main types of EB are:
EB is normally present at birth or the first few weeks of life. The key feature of all types of EB is that the skin is fragile, leading to a tendency to develop blisters and wounds in the skin after mild trauma (e.g. injuries from bumps or friction).
Some children will have a few blisters while others will have a lot. The blisters are most often found on the feet and hands, but can also form in other parts of the body, including the face, nappy area and mouth.
The wounds heal slowly and can become infected quite easily. If your child has EB, they may have some of these other issues:
Generally, the deeper the blistering, the worse the disease, but this is not always the case. In dystrophic EB, there is a higher chance of developing skin cancers in teenage years in areas of repeated injury.
If your child shows any signs of EB, see a GP. You will be referred to a dermatologist for diagnosis.
Your dermatologist will be able to specifically advise you on the type of EB your child has, and organise tests and create an individual management plan for your child.
Depending on the type of EB and which parts of the body are affected, various health professionals may be involved in caring for your child. These may include dermatologists, specialist EB nurses, gastroenterologists, geneticists, dentists, podiatrists, dietitians,
occupational therapists, social workers and plastic surgeons.
EB management aims to:
Contact your specialist doctor or EB nurse if your child:
Please note: These websites contain information that may not be relevant to your child, depending on the type of EB they have. Many websites are aimed at people with the most severe types of EB, and may be upsetting to some people.
Is EB contagious?
EB is not contagious as it is not caused by an infection. EB
is a genetic condition, and it can't be caught by coming into contact with
people who have it.
If I have a child with EB how likely is it any future children
will also have EB?
This depends on whether both parents have the gene for EB or
if only one parent does. Genetic counselling and prenatal testing may be
available, and are worth considering if you are planning on having more
Is a cure for EB far off?
There is significant research being done into
EB, including gene therapy and cell-based therapy, as well as wound healing
creams. These therapies aim to improve quality of life of people with EB.
Discuss the latest treatment options with your child's dermatologist or EB
Developed by The Royal Children's Hospital Dermatology department. We acknowledge the input of RCH consumers and carers.
Reviewed June 2018.
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