By P. Hojri (pseudonym)

Throughout my life, I have suffered from a genetic skin condition passed down from my father. Growing up with this condition, it felt like a natural part of my everyday life, and for that reason, I never pursued any medical help or outside help - I essentially used ignorance as a coping mechanism.

At the age of 25, I decided to live my life to the fullest. Having this rare skin condition had made me a hermit, and compared to my peers and friends, my social life was lacking considerably. At this point, I decided to enjoy the usual 20-something activities such as travelling and attending festivals, without really giving much thought to my physical limitations. Before attending events or travelling, the most I would do was purchase a few extra Compeed plasters and moisture-wicking socks. However, I soon found out living life as a "normal guy" in his 20s wasn't that simple. My travels would usually end up with my feet covered in blisters, which, in turn, made me miserable to myself and to my friends. Likewise with attending festivals. I went to Glastonbury in 2017 and Tomorrowland in Belgium in 2018 - both of which I suffered greatly, and I also missed out on many acts due to being incapable of walking or standing. It was at this precise point that I decided to seek help and try to explore my options.

After a six-month wait, I was referred to St Thomas’ Rare Diseases Centre where my condition of epidermolysis bullosa simplex (EBS) was confirmed, and I was offered more support. It was also at this moment where I was introduced to DEBRA UK. You see, as a sceptic, I was reluctant to engage with DEBRA UK or any other charity for that matter - you can argue there was some peer pressure involved at the signup; however, this has been one of the best decisions I have ever taken.

Since signing up as a member with DEBRA UK, I have gained important knowledge about the EB community and the support available to us. I was given support with obtaining a Blue Badge; this has been an important inclusion in my everyday life, and I now suffer much less, especially after a bad outbreak of blisters. After obtaining my Blue Badge, I was told about the various government support that was available to me, such as Personal Independence Payment. With the support of DEBRA UK through one-to-one appointments, I was able to successfully apply for this, which has given me financial support with some of the costs of bandages and plasters, as well as reapplying for my Blue Badge.

As well as the support and advice given to me, I have also been able to meet some great individuals and characters through the DEBRA UK community that share my condition. During Covid-19 lockdown, we were able to attend weekly online Zoom events to discuss various aspects of our lives. They provided emotional relief during a difficult period, and it was comforting to know I was not alone with this cruel condition.

As a sufferer of EB simplex, I couldn't be more thankful for the assistance I have received over the last few years, and I wish I had known about DEBRA UK a long time ago. Living with EB simplex or any other EB condition isn't easy, but knowing there is support and advice at any given time has been a massive help to my life and situation. Besides their personal help, DEBRA UK also fund research into repurposing medicine and looking at cures. With all that being said, I would urge anyone with EB or as parents of children suffering from EB, to sign up to DEBRA UK.

 

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The DEBRA UK Membership Team run community events throughout the year, including virtual ‘Members Connect’ calls and in-person events, where members can share their knowledge and experiences of living with EB, and connect with others. DEBRA UK have also recently launched EB Connect; an online social collaboration platform for the global EB community.

The DEBRA UK Community Support Team provide support and care for the EB community, including helping to secure financial support through government schemes and providing grants to fund specialist equipment to help make life more comfortable.