Leslie's dystrophic EB story: LeslieLeslie lives with dystrophic epidermolysis bullosa (DEB).

Living with Dystrophic EB is an unimaginable roller coaster for Leslie Paine

No one knew what was wrong with me at first, my Mum and Dad thought it was just a bad case of nappy rash as my skin was always red, weepy and swollen and would immediately blister in and around my groin area. When I started crawling the skin on my elbows, forearms, knees, shin’s and feet would tear and peel off. My Mum and Dad were told I had EB and the Doctors referred to me as a ‘cotton wool baby’ – people were too scared to touch me.

Growing up with EB in the 1960s was pretty difficult. I tried my best to fit in with other children. The treatment I had back then would involve my mum putting Vaseline gauze on my wounds and wrapping me up in crepe bandages. I would always try to fit in with my friends but the dressings would come undone and I would look like an Egyptian mummy running in the playing fields where we lived. I kept on persevering, always trying to stay positive, determined to not let this condition beat me so I trained as an engineer like my father. I really loved my job but the EB symptoms worsened over time and it became impossible for me to perform even the simplest of duties. My hands were in bits as my skin was constantly infected. I also started suffering chronic pain in my feet, ankles, knees and arms. So unfortunately after medical advice I had to stop working in my early 30s.

The physical symptoms of EB are obvious to people but the emotional and psychological trauma you feel are just as painful. It would take me 3 hours to do my own bandages and after a while I just gave up. I just couldn’t be bothered or was too tired and weak to make the effort. The constant itch drives me mad, and in my sleep I would tear and blister my skin constantly. My skin feels like it’s always on fire. Looking back I should have asked for help a lot sooner but I just thought I could cope on my own and I wasn’t aware of the support services available to the EB community. I have recently been given a care package and I now have a dedicated carer who visits me twice a day to do my dressings. I’m not suffering in silence anymore.

I was introduced to DEBRA in 1996 after I had been referred to the St Thomas specialist EB unit. The support DEBRA has given me has changed my life. I am now in regular contact with other people who have EB and I receive so much information and support to help with my everyday life.

My parents always told me to never let EB stop me trying anything once. And I have stuck to this rule all my life. I started riding a motorbike in 1981 and past my test by age 19. It’s the one big love in my life and takes me to a place where I forget about EB for a few hours. When I speed off on the bike it’s like I leave EB in the gutter. It just becomes dust. I do need to double up the foam dressings to protect my EB skin against the motorcycle clothing or as I term it ‘my body armour’, so it doesn't peel and blister skin. And after I have a day on my bike I need several to help my skin recover. But it is still worth it.

Life with EB is an unimaginable roller coaster and it has had a profound and devastating impact on my life. But I will not let EB beat me.

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At DEBRA, our work is focused on funding research for treatments and ultimately a cure, while also supporting people and their families living with EB to enhance their quality of life through improved healthcare, access to information and respite care.