Dean Anderson wrote this article for the EADV News, the magazine of the European Academy of Dermatology and Venereology.
It appeared in the Autumn 2006 edition as part of a two-page feature on EB and DebRA.
Sunday
The day starts at 5am but the night before I have to take 15 minutes to prepare my bandages, which include a long list of creams, band bandages, gauzes and oils for the bath, among other things.
I start by taking off bandages on my arms then my middle bandage that gets cut off, another time saver. Just two legs to go and then I will be in the bath, I can’t wait to ease the pain.
Once I get in the bath, I’m in there for half an hour to enable taking off old dead skin and dry blood and this is done with a soft cloth, with I do myself. Once I’m out of the bath I drip dry, then put on the cream. Then my mum puts on new bandages and then I re-do my two legs, two arms and my middle.
After cleaning up the mess from the old bandages, I rest in preparation for the week to come.
Monday arrives
I wake up at six to have a patch-up if needed. It’s soon time to go to college so I get dressed in soft clothes like a tracksuit and trainers. If my feet are bad then I wear slippers for ease.
The course I am on is Art and Design. I have a one-to-one helper to help set up my equipment and once it’s set up I can work on it independently.
The students in my class have accepted my condition and they get on fine with me. I get around college on my scooter and if the lessons are upstairs and my feet hurt I use a lift as well as a manual wheelchair to get up and down the floors with the help of my carer.
After dinner I can do my homework, watch TV or play the Play Station. I go to bed at about 12, although it is often later as I can’t sleep when I get an unsettled night due to the state of my condition.
More About My Life
At half term in the holidays I go to Douglas House for respite. In my spare time I help DebRA by doing talks and speaking about how I cope with my skin condition. I do this to help other people with this condition and to raise awareness.
Every four to six months I go to the hospital so the doctors can check my skin and have a blood test to see if I am low in iron. If the results come back saying low in iron I have to have an iron transfusion. I also see a dietician who can check my weight. If my weight is less than the six months previously, they will put me on supplements such as a nourishment drink, as well as eating three meals a day. (They are BIG!)
I try to stay positive but sometimes my skin can be bad, so that’s where the power of music helps. I don’t like taking painkillers (just Paracetalmol), but when I’m really bad I will take one. When the pain goes away it helps but when the painkiller wears off I’m in even more pain than before I had taken the painkiller.
Due to the determination of my supportive and strong family it has made me positive and strong minded and kept me going.
Dean Anderson
