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A person with Epidermolysis Bullosa has to pay attention to literally everything. Even a small abrasion will cause a painful injury. Therefore, these people have to wear right shoes and dress to prevent injuries. Particular care should be taken when coming into contact with hard surfaces and friction. Even routine work such as using a towel, sitting, touching objects can be a source of pain.
In small children, crawling and touching toys can cause injury.
When lying and sitting, person suffering from the disease should come into contact only with soft surfaces. Anti-decubitus mattresses and mats are used. Patients are preventively bandaged on most of the body..
For children and parents, the treatment is physically and mentally demanding as it takes 2-3 hours per day.
The body is naturally weakened, susceptible to infections and diseases. At the same time, the wound healing ability and the high susceptibility to infections are major obstacles.
Patients usually have no choice but to eat mixed meals. Solid food causes pain and problems with swallowing. Consumption of unsuitable foods may result in dehydration of the body. Mixed meals often fails to contain the optimal number of nutrients, causing other health problems (malnutrition, anemia, etc).
People suffering from this skin disease require constant care regardless of whether they are a child or an adult. Professional personal care is a necessity, which is expensive for families.
As the disease affects various parts of muscle, movement is significantly impeded. Usually the use of a wheelchair is essential.
Not everyone has an understanding for people with Epidermolysis Bullosa. There is often a belief that a child suffering from such disease is physically abused. However, the opposite is true. Parents must provide extraordinary care to children, and that is usually mentally demanding.
Possibilities for spending leisure time for a person suffering from the diseaseare also limited as they cannot visit pools, for example, because of the erroneous view that Epidermolysis Bullosa is a contagious disease.