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Donation Account: IBAN AT02 2011 1800 8018 1100, BIC GIBAATWWXXX, DEBRA Austria, Am Heumarkt 27/1, 1030 Vienna

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The most important information for emergency situations

Birth of a Child suspected to have EB

When open sores, blisters or areas of missing skin are detected on a baby after birth, then a pediatrician should be consulted immediately. The pediatrician will then rule out all other diseases that are present with the same symptoms. Once other diseases were ruled out (particularly infections), you rather quickly have to think of epidermolysis bullosa. In order to make a diagnosis of epidermolysis bullosa, special investigations maybe required. Except in cases where the disease has previously been observed in the family, you will need a small skin sample taken which is performed under local anesthesia.

Basically, when a person with EB has an accident the rules are the same as with any emergency:

  • Keep calm
  • Get help
  • And: protection of life is the first priority.

When life saving measures need to be taken there will be no time for thoughts about how fragile the skin is. You have to respond rapidly and in this case any damage to the skin you unfortunately have to accept.

A serious problem can often occur when the patient has to been placed on a respirator. When a patient with a severe form of EB is intubated (= placement of a plastic tube into the windpipe) problems can develop.

When a person with EB is admitted for an illness or an emergency to a hospital, where their history of EB is unknown, they need to inform the medical staff immediately. The staff has to be aware of the fact that EB patients have a higher risk for injury to their skin. When the staff is properly informed on admission you can avoid injury later.