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EB Awareness Week: EB is family affair for 82 year old Terry Cook who has EB Simplex

“EB to me is learning to walk every day."

I was never actually told I had EB but then in the 1920s no one really knew what it was. We had no NHS so getting a Dr was difficult, let alone a diagnosis.

I’d say EB certainly runs in my family. My dad was in the army but got a medical discharge during the war due to EB. My brother has EB as does his daughter and her three children. And my daughter also has it.

I remember from a very young age my dad dressing and cleaning his blistering hands and feet at night. Back then EB was just called ‘blisters’. My symptoms were exactly the same as my dad’s and when it got bad dad would use a needle and wool to burst the blisters on my hands and drain them.

I have always loved sport since I was a child and played football every week despite the fact it made my feet blister even more. But football was more important to me than EB. I support Ipswich football team and used to be a season ticket holder but had to stop as travelling to the games became a bit difficult with walking to the stadium as my feet are so sensitive. I also love boxing and fought in a couple of matches during school. I had to use more bandages than usual because of my condition.

I decided not to tell any of my employers I have EB as I did not want to be treated differently or be denied work just because my skin always blisters. I started work in a chicken factory aged 15 and then went into the navy aged 17 and a half although was medically discharged a year later. Even the military medics did not know what EB was or how to treat it. I once had a medic cut my skin and poured pure alcohol over all over me as they thought it was a suitable treatment. It was excruciating.

I finally got an official diagnosis of EB in the late 1970s when I went to the hospital with my daughter. This is when I was introduced to DEBRA by one of my Doctors at St Thomas’s hospital. Before these things were really tricky but DEBRA has really helped me. I finally had some support and I got to meet and speak to people who knew about my condition and what I was going through. The treatments for EB have really improved over the years. When I was younger, I once visited a hospital in Ipswich to see a podiatrist as my feet were saturated in blisters and the podiatrist used a rough scrubber to remove the skin. He had no idea what EB was.  Today of course we have specialist bandages and creams to ease the pain.

Despite my condition, I have been lucky enough to travel the world and still go to France every year. The heat can play havoc with my skin so I try to go to places which are not too hot.

People often ask me how I have coped with such a painful condition, but it is just one of life’s difficult hands, you just get on with it. You can’t let anything beat you.

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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.

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