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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. The skin is so fragile that 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 two main layers, the epidermis (the topmost layer) and the dermis (the inner layer). These layers are normally held together with proteins that act like a glue. The genetic changes in EB cause these proteins to be reduced or missing, and this results in easy
blistering and skin breakdown with minor injury.
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 more severe disease.
EB is not contagious, it is a genetic (inherited) skin condition. It cannot be caught by coming into contact with people who have it.
There are many different forms of EB, and it ranges from a mild to a severe disease. The four main types of classical 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:
In general, the deeper the blistering, the worse the disease. However, this is not always the case. In some forms of dystrophic EB, there is a higher chance of developing skin cancers from the teenage years and beyond, usually in areas of repeated skin 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, 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, paediatricians, gastroenterologists, geneticists, dentists, pain
specialists, endocrinologists, plastic surgeons, podiatrists, dieticians, psychologists, occupational therapists, physiotherapists, and social workers.
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 cannot be caught by coming into contact with people who have it.
If I have a child with EB how likely is it that any future children
will also have EB?
This depends on the type of EB that your child has been diagnosed with. Genetic testing for your child, you and your partner may be required to accurately answer this question. 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 conducted worldwide for EB, including gene therapy and cell-based therapy, as well as wound healing creams. These therapies aim to improve quality of life for people with EB. Discuss the latest treatment options, including the potential
for inclusion in clinical trials, with your child's dermatologist or EB nurse.
Developed by The Royal Children's Hospital Dermatology department. We acknowledge the input of RCH consumers and carers.
Reviewed August 2020.
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