‘I thought university was an impossible dream – but look at me now’

Henry George
Henry George

This week disabled student Henry George, 20, starts his second year at university. Here, in his own words, he tells how he is determined not to let his painful and debilitating skin condition stop him from his achieving his dreams...

My first year at Royal Holloway University of London was my first extended period away from my home in Chearsley.

I learnt it is possible to live independently, and that you can have fun doing so.

My condition is Dystrophic Epidermolysis Bullosa.

This is a genetic condition, and means my skin is extremely fragile because of the lack of collagen between the layers of skin, which are meant to hold them together.

This has made moving to Royal Holloway, like the rest of my life, extremely challenging at times.

However, I will finish university, and then I plan to go into journalism.

I was born with Dystrophic Epidermolysis Bullosa, which has affected every part of my life.

I have daily dressing changes, as my condition leads to blistering and open wounds.

I also suffer from random eye injuries at night, when the conjunctival membrane of my eye tears during sleep.

This is extremely painful and can put me out of action for anything from half a day to a week, during which I cannot open the injured eye due to the pain.

Pain is something that I and every other EB sufferer has to deal with everyday, and can have a negative effect not just on us but everyone around us.

Pain makes you want to curl up in a ball and hibernate until it’s gone, which means you don’t feel like doing anything, as pain is exhausting.

Because of the effect that pain has, it can be difficult to keep up with other people, and can leave you looking distant and disconnected, which can be difficult to get through while trying not to let it affect the people around you too much.

I had a 50% attendance rate at school, because of the eye injuries, but also because of the normal illness, and operations to stretch my oesophagus, the part of the throat food goes down.

I have to have this operation as my oesophagus tightens up as a result of acid reflux as a baby.

I currently have these stretches every 3-4 months, although it was every 6-8 weeks when I was younger. At the last count, I’ve had around 55 of these operations.

Despite this, I achieved good GCSE’s and A Levels, which allowed me to read a degree in history at Royal Holloway.

Another effect of EB is the webbing or joining together of my fingers and toes.

In 2012 and 2013 I had plastic surgery to release my thumbs.

I can do much more for myself now, but even before the procedure I could write and type on my own.

I thought that the hardest part of getting to university would be doing the exams to get a place, but looking back I now realise that that was probably the easy part. The hardest part was dealing with all the baggage that comes with being disabled, which for me was finding the right carers.

Because of my condition, I need 24 hour care, which involved helping me dress in the morning and changing my dressings in the evening.

We found two carers eventually, and they were with me on rotation throughout the year.

For the reasons above, I felt some trepidation about being able to fit in and get to know people.

This has at times been a problem for me growing up, particularly before A Levels, due to the fact people didn’t know how to approach me and may have been afraid of offending me.

Because of this, it has sometimes been difficult to make friends in the past, just because they didn’t know how to approach me and I felt more self-conscious when I was younger.

It also didn’t help that I couldn’t do the same things as them, such as kick a ball about or go out in the evenings due to my dressing changes which happen in the evening when at home.

This all created a barrier which was sometimes hard to break through, although not for lack of trying.

However, I needn’t have worried as my fellow students have been open minded and happy to treat me as someone who is just one of them.

I suppose it may be because everyone is that bit older than when we were all at school, which may help.

Alongside this, there are so many people of different backgrounds and with different interests at university that you are almost guaranteed to find people you get on with. I managed to do some socialising this year at university, as well as everything else, and will hopefully be able to continue and do even more this year.

The work at university level is quite a step up, particularly for something like history.

The reading required for history is extensive, and involves taking in large amounts of information in a relatively short period of time, so I learnt to skim read.

This, together with my improved undergraduate level essay writing skills, has meant that I have been able to keep up with the work at university, even though my attendance was still around 50%.

I’ll finish on this message.

If you are disabled, or even if you aren’t, and think that it is impossible to do something like going to university, or achieving something you have always wanted to, don’t think you can’t.

I thought I could never go to university, that it was some kind of impossible dream, the kind that promises so much but never materialises. Here I am however, having completed my first year. However, I could not have done this without the support of DEBRA, the charity that supports those with EB.

They have enabled me to live my life as fully as possible, and that means an awful lot to me.

If you would like more information about EB from the experts, go to www.debra.org.uk.