Henry George lives with Recessive Dystrophic Epidermolysis Bullosa. He shares his personal experience of living with EB, including his daily routine which involves hours of painful bandaging, how he manages his mental health and wellbeing, and how our DEBRA Community Support Team have supported him to live independently.




Living independently with EB



"EB has definitely been an emotional as well as a physical challenge for me.

The mind and body are intimately connected – when something happens to one, it affects the other. The pain I’ve experienced from the blistering and the wounds, has played havoc with my mood, while at other times the depression I’ve experienced has made the pain harder to cope with.

There have been times when I’ve just had enough when getting up in the morning is the last thing I’ve wanted to do. I’ve felt like I don’t want to face the world because I’ve had enough to deal with as it is. I have also felt very isolated. My EB can restrict me from being able to go out and socialise with friends. Even when surrounded by other people, my EB can make me feel separate from others.

As I’ve grown up I’ve had to accept my limits which living with EB brings and then learn how to work within those limits to live the best life possible. I’ve come to terms with the realities of my existence and how my life may vary from others. This doesn’t mean being fatalistic about things, being passive or just accepting things without question. I have had to accept that life is going to be hard, having gratitude and appreciation for what I do have has kept me going. It has enabled me to see the good things in my life and has helped me realise that not everything is as dark as it could be.

The ongoing research and developments in the modern day world mean life is better than ever before for people with EB.

The Rare Diseases Centre is a great example of this since it has been opened just attending the hospital appointments is less hassle and not as intimidating as it was as everything is easier to access. Of course, there are everyday challenges which my EB brings, but having resentment for things that are beyond my control (which is easy to find yourself doing) isn’t helpful and doesn’t make things any better.

In partnership with gratitude, I have found taking the maximum level of responsibility I can, even if it’s for small things through the day, makes me feel more in control of my EB. This brings self-respect for dealing with life on your own terms. Gratitude and responsibility can be an antidote to the challenges EB inevitably brings.

For anyone with EB who is struggling with the emotional side of the condition, I would advise you to speak with someone about it, if you can, and find a professional.

Having thoughts run around your head can drive you mad and isn’t healthy, I have found talking things through, can make them easier to deal with. Things can seem very dark at times, and believe me when I say I know, but being able to talk about it can make all the difference in the world."