Maxine's story

Maxine has EB Acquisita, a type of EB which mainly affects adults but can strike at any age. It is caused by a breakdown in the autoimmune system and like of other forms of EB it causes severe blistering all over the body.

Maxine was 36 when she found herself coping with EB Acquisita. The photo shows Maxine on the right with her sister before she became ill.

Maxine says: "My EB is like a demanding child - it needs constant attention and everyday there is something new to cope with, another blister, another sore. It's a condition that never gives up or goes away."

The antibodies in Maxine's body are attacking her healthy cells and tissues rather than any foreign cells such as bacteria. It is this process which causes the constant blistering of her skin.

Dealing with such a devastating condition in your 30s, when life is going well and you see a bright future ahead has, as you can imagine, been extremely difficult for Maxine.

As a model and dancer, Maxine was used to having a busy life and demanding but rewarding career. She travelled extensively and performed at many top venues and thoroughly enjoyed the lifestyle that her work provided. She also modelled in advetisements and her long legs and elegant hands won her many high profile jobs for magazines such as Marie Claire, New Woman and Company.

She first saw changes in her skin when calluses appeared on her hands and then she started to notice an intolerance of pepper and hot spices in her mouth.

The problems gradually became more severe and it took six months and a referral to a specialist at St Thomas' Hospital before she was given the diagnosis of EB Acquisita.

Maxine's condition affects her whole body including her scalp and gums. She still sets very high standards for her appearance and has found a natural looking and flattering long wig and copes with dentures. However, most of her body has to be bandaged every day to help treat the blistering and stop infections.

Maxine says: "I have a better understand of my EB now - I know how to treat it, which bits of my body to leave and when to use the different types of dressings. I'm constantly tending to my feet, legs, back, arms and trunk. My hands are quite bad but I'm determined not to lose the use of my fingers. The constant healing can cause webbing between your fingers and then you can't use your hands - I really don't want that to happen.

"My back and feet are the most painful - I try not to take too many pain killers, they can make me feel strange. I leave the pain until it is at a level of 10 out of 10, then I take soluble pain relief as I find it more effective. I make sure that I get up and dressed everyday, do my make up - it makes me feel better and more prepared for the day.

"My EB and its symptoms change everyday and it's so demanding - I honestly feel it's like a baby or young child, I get rather tired of coping with it and think ‘what do you want now'. It's very wearing but I try very hard to stay positive.

"Cynthia from DebRA, helped me get an adapted car, so I can get out easily, and I so look forward to the charity's weekend away for adults who have EB. The trip and being in good company make me feel so much better and the feeling stays with me all year - I just keep looking forward to the next time. I try to help DebRA when I can, I've been to talk to shop staff about EB and I make donations to the local shop.

As for the future, Maxine knows that her EB will continue to be a large part of her life: "I just don't know how I would have coped without DebRA's help. The charity has been a lifeline and I wouldn't have the confidence to be the person I am today without DebRA."