'Pain is all you know'

Imagine living with constant blisters, open wounds and the prospect of surgery every few years. Lucy Glennon explains what it's like to have the rare skin condition epidermolysis bullosa
Lucy Glennon, who has epidermolysis bullosa
Lucy Glennon, who has a rare and painful skin condition called epidermolysis bullosa. Photograph: Sarah Lee Sarah Lee/Guardian

There is a one in 17,000 chance of being born with epidermolysis bullosa. That statistic could make you feel special or unique, but it makes me feel a bit unlucky, because it is one of the most painful disabilities to have. I was born with EB in 1985, and there is no cure for it yet. It is a rare genetic condition where the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds. Neither of my parents had the condition, as they carried the gene recessively.

Imagine a constant pain all over - a pain you are used to because it is all you have known, and you have it with you all the time, kind of like a friend. Parents of babies and children with EB can't hug them as they would like, as they would tear and damage their skin, and growing up with the difficulties the condition brings is hard. There is always some ache or twinge, and being entirely comfortable is a treat. Ordinary painkillers do very little, so many sufferers rely on stronger stuff such as morphine to help them cope with dressing changes, treatments and so on.

Rough physical contact when I was a child was always a hazard, but school days were fun in other ways. Going into the "big yard" at primary school one lunch time, I got a football in the face, which made me phobic of all balls. As sports were a no-no, I read, used Play-Doh (which improves the dexterity of young EB sufferers) and was allocated a smaller play yard where ball games were banned and friends understood that they needed to be careful with me. But truly, my main passion started in the classroom when we got our first Apple Macintosh computer. I had never seen or used a computer before, but the teachers let me have a go, and I fell in love with technology. Today, I am a dabbler in gadgets, saving up for whatever shiny new tech takes my fancy. I am the go-to gal for computer problems and new mobile phone recommendations. But my flair for hardware is not without pitfalls. Buttons on remotes and phones can feel like pressing pebbles, switches can be tricky, and some handheld devices can be difficult. When playing Mario Galaxy on my Nintendo Wii, I hold the nunchuck between my left hand and knee, which makes me flail like a tangled puppet.

Starting secondary school can bring on a fresh challenge for children with EB - a bigger and new environment, increased workload, and hundreds of people who don't know about your condition. Making friends and getting to know people can be difficult. You wonder if your condition puts them off from talking to you, and detaches you from the rest of the group, or perhaps you might not feel confident enough to talk to others in the first place.

My mother died from cancer a few months before I started secondary school, which left me feeling uneasy and confused. A few years into secondary school I attended one of the discos. Why I went, I don't really know; I sat at the side. Nicky, a student from my form, sat next to me, and she too found the whole thing tiresome. We found ourselves laughing at the ridiculousness of it all. I had made a new friend, and I soon felt more confident.

I had non-teaching assistants throughout school and college, and they helped me cope - opening doors, carrying bags and equipment, and writing. While I was at college, I decided I wanted to go to university. In recent years, because disabled support has improved, more smart and talented EB adults can now consider higher education. Some take the brave choice to move away from home, and then have carers help them with medical and domestic needs. Transport is a huge issue, as buses, tubes and trams can be busy and bumpy, and are best avoided.

I was not ready to move from home, so I chose a university close to my home town of Rotherham. I got into Sheffield Hallam University to study media and journalism, and I went to lectures by taxi. At first, I thought I would need an assistant as I always had previously at school and college, but the environment was different. I was able to move around independently, and I would only carry with me what I needed. I also made another great friend, Charlie, whom I met on my nervous first day. She helped me if I felt tired, and listened to me moan if I didn't understand media theory.

For people with EB, surgery on the hands is necessary every few years. The condition of the hands deteriorates, and the fingers no longer remain separate and straight, so surgery is required to improve the dexterity, and keep the fingers apart. A skin graft is taken from elsewhere on the body if available. This means trips to the hospital for many operations. As a child, I once had my hands operated on a couple of weeks before Christmas at Great Ormond Street Hospital, in London. I was not a cheery girl on Christmas morning, unable to open anything, with both hands bandaged. I cannot remember how I ate Christmas dinner that year.

EB affects the sufferers internally, as well as their skin. While it is difficult enough to absorb any nutrition to grow, as it all goes to waste trying in vain to help the skin heal, problems with swallowing can make mealtimes hard. Many EB sufferers have a tube from their stomach that enables them to have nutritional feeds pumped into them overnight. I was given the option of having one of these tubes when I was younger but I declined, choosing instead to work hard, and eat all I could. I believe it was the right choice for me, as I love food, and there's nothing I like better than a good meal. Moving to London has meant that there is a whole world of food for me to explore. It's something I can get great pleasure out of, like anyone else.

Because people with EB have difficulty getting enough nourishment, they can often be tired and anaemic, and need to take iron supplements or have infusions every so often. If someone has had a stressful time, been ill, or simply become weary because of extreme temperatures - summer can be particularly bad, as being covered in bandages does not help in keeping cool - blood transfusions or iron infusions are needed to perk them up, and the difference is briefly noticeable; you sleep and wake better, you have more energy, and you can walk more. My father recalls that, when I was little, I said I felt like skipping out of the hospital after an iron infusion.

Because moving can be difficult, comfortable, stretchy clothes are necessary, and finding shoes is a task to dread. Cruel to myself, I swoon over mary-janes, wedges and all pretty, ladylike (and not-so-ladylike) shoes. Despite being limited in what I can wear, I love to browse stores, and unless I am having a particularly off-day, shopping is one of the few things I can do pretty well.

While EB is a cruel condition that never gives the sufferer a break, the rippling effects of the condition touch the whole family. Parents and siblings transform into carers and nurses. Holidays take major planning, if they can be taken at all, as travel, particularly long-haul, is uncomfortable. Frequent hospital appointments with different departments that require endless examinations and tests are tiring and soul-destroying. The hours taken at home to change dressings cloud over the rest of the day, and leave you drained, emotionally and physically. The parent of a child or adult who has this condition feels sadness, and also a twinge of guilt in helping them in this pain-inflicting routine. As the individual with the condition, you feel bad - on top of the physical pain - that your parent or carer has to endure it with you, and that the burden is shared out to people you love.

The same can be said for friends. EB tries hard to strip enjoyment out of whatever it can. Plans for days or evenings out are scuppered if you are having a particularly painful time, and some things, such as long walks or theme parks with rough rides, are out of the question. The combination of wanting to do the things everyone else can do, and the feeling of letting people down by not being able to join in, leaves a sad, heavy feeling inside.

After hard times like those, I find it important to switch off and relax, just to separate myself from anything unpleasant I have felt. Everyone is different, and while it is technology and chocolate that helps me unwind, the hobbies and interests of others with EB are varied, from animals, cars or watching football, to meteorology. For EB sufferers, it is their passions and strong wills that keep them going.

Today, I am living independently, enjoying what London has to offer. I have carers who visit me, help me get ready for the day and wind down in the evening. They help with any medical and dressing needs, and they clean my flat and do any other chores or cooking I require. I barely have a free week, with friends and family making good use of my sofa bed, to stay and enjoy the city with me. One of my favourite things to do is to stroll around Russell Square with my dad when he visits. I have friends here, and I am getting to know lots of people in my area, and establishing my local haunts.

Sometimes I am asked what would be the first thing I would do if I became completely cured, be it through a medical advance or miracle. I always imagine the same thing. I go shopping, either with my friend Nicky or my sister Sally, and I can finally try on those shoes, or that skirt that won't reveal bandages any more. I would build up my energy and stamina, and walk everywhere around London. I would take up cooking lessons and some kind of physical activity - swimming, dancing, sumo wrestling, whatever. With a to-do list like that, I am optimistic and hopeful things will heal for real, some day.