Living With Eb

Humphrey Hanley

Having REB; what will be the key to a life that is as healthy and especially as happy as possible, in spite of having EB? In any case it is important to search for a right balance between the misery EB causes, and the effort to try to reach as much independency as you can get.

For newborn babies with EB, constantly having pain and daily being bothered by the treatment of their wounds and blisters, life can be a real torture. The general opinion in New-Zealand is that parents of young EB-children should not be directly involved in the changing of gauzes and bandages every day.

It was the reason that an institution named Family Care (originally set up for asthmatic patients) got involved in the treatment of Humphrey. The parents did no longer participate in the changing of gauzes, and in this way got a better and more normal relationship with their son.
This approach had a positive effect on Humphrey; he did well, grew into a reasonably mobile teenager and became more and more independent. Of course his peer group took his skin disease into account, but in general their way of dealing with Humphrey was quite common.


Nowadays Humphrey has a girlfriend, and managed to get a bachelors degree. He's having a job now in a big power-company. Working there asked for a few adaption's, like a PC with a headset, and being able to have flexible working-hours. In this way it was made easier to integrate treatments in his daily working life.

Humphrey, is spite of EB,  still aspires to function as normal as  possible .He took too much risks now and then, but also learned to handle this ; like participating in sport; horse driving, diving, water boarding, skiing and cricket. Taking a part in all those sports became possible for him, although sometimes the sport-outfits had to be adapted with extra protection material.

Humphrey concluded his presentation with his device: Try to live as happily as you can, even if you have EB.

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