Epidermolysis Bullosa Home Care Standard care plan patient information Psychological affects

The birth of a child that (unexpectedly) suffers from EB causes shock and
disbelief in the parents because they are confronted with a chronically ill child. Just like in other parents of children with a chronic disease, all sorts of emotions may occur: rebelliousness, insecurity, fear and helplessness about what is going to happen in the future and what it means to have this disease. In addition, there may be denial, sadness or depression because of the restrictions resulting from the disease. People feel isolated because the environment does not sympathize with them or because they are largely housebound. The disease generates a feeling of insecurity because people have no grip on it. People may also feel embarrassed because of the (altered) appearance of the child.

In the beginning there is usually concern, disbelief or denial.

Later, these emotions change to sadness, acceptance and efforts to deal with the disease. Frequently, there are also feelings of continuing helplessness, despair and feeling (over)burdened.

As soon as the child with EB reaches the age up on which he/she becomes aware of the disease, largely the same emotional problems may occur as in the parents. When the child is not aware yet of the disease, particular negative feelings may already be present, such as: crying and not sleeping well because
of pain or itch and feeling helpless because the child wants to do things but he/she is not able to do them.

The fact that the disease is unpredictable: `What is going to happen?' composes
a great burden. For the patient nor the environment, there is hope for
`other times' and the care never ends.

Besides, the care does not produce any concrete results in the sense of improving the disease.

Quote of a patient:

`I am not very badly handicapped. I can walk, only my hands are fused. I do find that people react stupidly towards handicapped people. They are often staring or watching in an underhanded way. I simply look back at them and ask them: `Can you see properly? Do you want to look again?' I do not let it get to me at all and simply do the things that everyone does, go to the cinema, or theatre and also on holiday like everyone else.'