Prevention is the best option

Health tips on caring for patients with ampullary epidermolysis

Epidermòlisi ampul·lar a Vall d'Hebron

Ampullary epidermolysis is a group of genetic disorders that may present themselves in various ways, from milder forms to more severe ones: affecting the skin and mucous membranes, involving the formation of blisters and vesicles after the slightest trauma. They can also affect other organs, in different ways.


What do you need to bear in mind if you have ampullary epidermolysis or you are caring for someone who does?

The best thing is if the patients, their families and their caregivers receive comprehensive health education, especially when they are first diagnosed, during the baby’s first few days, when skin lesions can already begin to occur.

The education aimed at preventing the evolution and complications of the disease will be given by professionals from the following disciplines:

  • Dermatology
  • Plastic surgery
  • Nutrition
  • Paediatrics
  • Rehabilitation and occupational therapy
  • Community and hospital nursing
  • Psychiatry
  • Psychology


Skin affected by ampullary epidermolysis is very sensitive to the slightest pressure or friction, which then causes a blister to form. To avoid damage, bear in mind the following recommendations:

  • Do not apply any adhesive products to the skin, such as plasters, stitches, electrodes, adhesive dressings, etc.
  • Intravenous channels should be attached using gauze and cohesive bandage on top, without touching the skin, or with a silicone plaster. If pressure needs to be applied, Vaseline should be placed on the pressure point.
  • The patient should always be lifted with open hands, without causing any friction or pressure.
  • Their surroundings should be protected, adding cushions and pillows to avoid unnecessary blows.
  • A water mattress may be used with a foam, latex or memory foam support.
  • Nappies should not be too tight, and the skin should be protected from fiction using gauze or cotton.
  • Clothes should preferably be cotton, as it breathes more easily and is easier to put on. Avoid rubber, zips, labels and other details that may rub the skin. Seams should be put on inside out.
  • The skin should be protected from sunlight and keep an eye out for spots and freckles.
  • Keep the skin as hydrated as possible.


Other related health information

  • Treatment of injuries (dressings and healing materials)
  • Treatment of skin complications
  • Treatment and decontamination
  • Treatment of nutritional and gastrointestinal complications
  • Treatment of pain
  • Infection control
  • Rehabilitation treatment 
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