By Henry George

 

My name is Henry, I am 29 years old, and I live with recessive dystrophic epidermolysis bullosa (RDEB), a genetic, and currently incurable skin blistering condition which causes painful blistering and wounds all over my body.

Living with EB makes everything more difficult for me. For example, something as simple as getting dressed in the morning can take anything from 30 minutes up to an hour, depending on the time I need to adjust or change my dressings. And this is something I need to do every day.

Having lunch is not a quick thing for me either. It can take up to one and a half hours because I eat slowly, due to my mouth not opening very wide, but also because I have blisters and ulcers on the inside of my mouth due to EB. So my eating is not only slow, it is also very painful.

I have my dressings fully changed every other day. This involves getting in the bath and soaking off all my dressings and then reapplying them. The whole process is lengthy and normally takes between three and a half to four hours from start to finish.

Just getting up, sorting my dressings, and eating, takes a big chunk out of my day. It is not only time-consuming, but the full dressing change can be very painful.

I take medication to help me cope with the pain from EB. I could not do without it. This used to be paracetamol, but as I have got older my EB has become more severe. I now need stronger pain relief and I now regularly take Tramadol.

EB is a physical condition, and managing my blisters and wounds takes up a huge part of my life. However it also has a significant impact on my mental health, the invisible side of EB that most people don't see.

I have had periods of my life where I've had low mood and felt depressed because of my EB. Thankfully, I have received support from a psychotherapist, who supports the dermatology team at Guys & St, Thomas’. I feel more people living with EB should seek out this support. It has really helped me to be able to talk about things and express how I am feeling, which has helped me to come to terms with my condition and in some ways accept the limitations that EB places on me.

Without having support to ensure my mental health is strong, managing the physical aspects of my EB would be much more challenging.

A period of my life which positively impacted my mental wellbeing was going away to university. As far as I am aware, it is not the norm for people with the more serious forms of EB to live away at university, but it was something I really wanted to do. And the whole experience gave me the tools I needed to develop as a person. It gave me my independence, and it gave me experience of life itself, which was really importance for me, as EB is obviously a part of my life, but not its beginning or end. One must be realistic, and it wasn't easy at times. There were points where I wondered whether I would make it to the end of the degree. EB undoubtedly played a significant role in making it much more of a challenge. However, it was definitely a time I look back on with affection and pride. If at all possible, I would recommend going away to study at university to others living with EB.

I currently live at home with my mum and dad, but I have live-in care to support me. I am more independent now than before I went away to uni, but I do want to be able to live independently once more, and I am actively looking for my own place where I can have my own space, and live independently and fully as an adult. This is important to me.

EB has certainly made life more difficult for me, I am grateful for the support that I receive from the EB healthcare specialists and from DEBRA, as it is definitely not an easy condition to live with. It dictates my daily routine, and it creates unbearable pain that I unfortunately must live with every day. I hope one day that treatments will be available that make EB easier to live with and less painful.

 

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DEBRA’s community support team has helped Henry to secure the financial support he needs to live independently through the government’s Personal Independence Payment (PIP) scheme and has provided support grants to fund specialist equipment that helps make Henry more comfortable.

 

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The EB stories blog on the DEBRA UK website is a place for members of the EB community to share their lived experiences of EB. Whether they have EB themselves, care for someone living with EB, or work within a healthcare or research capacity related to EB. 

The views and experiences of the EB community expressed and shared through their EB stories blog posts are their own and do not necessarily represent the views of DEBRA UK.  DEBRA UK is not accountable for the opinions shared within the EB stories blog, and those opinions are of the individual member.