Dean's story
Dean's Road to Independence
Dean Anderson is 27 years old and has severe dystrophic EB. In a published feature he described part of his routine:
"On Sunday the day starts at 5.00am. I start by taking off bandages on my arms then my middle bandage that gets cut off. Just two legs to go and then I will be in the bath, I can't wait to ease the pain. I soak for half an hour so I can take off old dead skin and dry blood. Once I'm out of the bath I drip dry, then put on the cream. Then my Mum puts on new bandages and that as well takes 30 minutes to re-do my two legs, two arms and my middle. Finally, I can have a break from the bathroom. I listen to music as this helps me to forget the pain and for the rest of the day I will rest in preparation for the week to come."
Dean's dream was to learn to drive, and have the freedom to travel wherever he wanted independently. He was thrilled when he was assessed for his driving capability and was told it would be possible with a specially adapted car.
Eventually, Dean took his lessons and passed his test. This was just the start of his journey. The Motability charity provided funding to adapt the car Dean had chosen and paid for out of his Disability Living Allowance, but this all took several months to complete. The result is a car which Dean can open and close remotely, transfer his wheelchair into the boot and enable him to steer using an adapted steering wheel.
In the meantime, Dean took the decision to move from the family home into his own place. A care package had to be agreed and funded, providing people to help Dean with his dressings and personal care as well as providing support in the home.
Dean is gradually adapting to living independently and he is the first to agree that it has not been easy - learning how to budget and deal with his finances, making decisions in his day to day life and just being on his own for longer periods.
For a number of years, Dean has attended DebRA fundraising events or meetings for medical professionals, speaking on behalf of those living with EB and making an invaluable contribution to promoting DebRA's work. Now he aims eventually to take on a more permanent role in work as a further step on his road to independence.