Tom lives with epidermolysis bullosa simplex (EBS).

A few words on living with EB Simplex

As we reset into a new year and decade, entering 2020 feels like a good opportunity to publish and share a few words on how it is to live with epidermolysis bullosa simplex, with the main objective of attempting to raise awareness of the condition.

What it is and how it affects me

Epidermolysis bullosa simplex (EB) is a hereditary condition I was born with. From the point of starting to walk my parents noticed signs of blistering on my feet, and it was at that point I was diagnosed with the condition. It is one of three strands of EB (Junctional and Dystrophic being the other two) and is not completely debilitating nor life-threatening like the others, but as a result, sufferers are more embedded into day to day society, which with it brings in other challenges.

Since I’ve been able to walk I’ve kicked a ball. I’ve always been sporty and active growing up, so participating in activities whilst in pain is something I have had to adapt to.

The condition mainly affects my feet when walking or running in warm weather. I’ve learnt that the trigger point for this is around 18°C plus, but I’ll also get them if active enough in cooler conditions. Blisters will flare up due to the friction, often the size of golf balls, which is likened to third degree burns by experts. The blisters will often form on the pressure points of my foot, but can form anywhere on my feet; the ball of foot, heel, on my toes, in between my toes, under my toenails, on the side of my foot.

How I deal with it

In order to stop the blisters from growing any larger I cut them with surgical scissors and then press them, this is excruciating but a needed measure to prevent them from getting worse.

The condition isn’t just physical pain but all consuming and mentally draining. A lot of energy is used blocking out the pain, particularly in social situations, and it can be difficult living with the condition in a society generally unaware of what it is. Particularly as my feet are often covered and on the face of it there will appear to be nothing wrong with me as there often isn’t anything visible. I often wish there was a different word to “blister” that could be used to better translate what it is, as society generally identifies that word as something a lot more minor. Because of this lack of awareness, and being fully entrenched in society, it is as much a psychological and social challenge as it is physical.

Luckily I work in an office environment, with a relaxed dress-code, however, if I had to work in a more formal environment where smart shoes are a requirement, which is likely to happen at some point in my career, educating people around me on the condition will be a necessity in order for them to form an understanding to enable me to work around it. The same principle applies in all areas in my life, whether that be walking around a city or playing a sport.

I’ve never wanted the condition to take control of what I do. I’ve spent the majority of my life playing competitive football and travelling to warm climates. As a by-product of this lifestyle I know I’ll be suffering pain and getting blisters more often than if I didn’t live this way, but that has never been in my mentality or make-up.

Prevention

There is no cure for the condition, and I’ve always been told by my mum – who also has the condition – that prevention is key. We have tried all kinds of treatments as a form of prevention, from botox in my feet to soaking my feet in formaldehyde, all having varying degrees of success but generally speaking nothing has formed anything resembling a robust resistance. Instead I’ve embedded certain measures into my lifestyle.

I’ve learnt that allowing air to get to my feet is absolutely paramount in keeping my feet cool, and if my feet are cool blistering is less likely to form. I do this by wearing flip-flops as much as I can during warm weather, this also limits friction. I have better awareness of the temperatures before playing football, and try to avoid playing when I know it’s going to be over around 20°C. If I'm out all day at an event such as a wedding, I’ll bring a spare pair of smart trainers for the evening. All these tweaks to my lifestyle have contributed towards those small percentages and fractions in helping towards prevention, but there is no magic formula.

How it feels

The best way to describe the pain is alike to my feet being on fire, with an urge to put the fire out. The biggest short term relief is to put my feet under the cold water tap, which relieves the pain whilst in the water and does resemble putting a fire out during that moment.

When the weather is warm I see my feet as ticking time bombs, and whilst the majority of society looks forward to the warm weather I do the opposite, although obviously enjoy getting the vitamin D! Once the time bombs explode the pain is off the scale, you can’t focus on general stuff which can be misinterpreted, and your energy saps out of your body as it spends it's resources, such as adrenaline, dealing with it. I feel it has however made me a more resilient person and built other characteristics in my personality as a result of coping with it.

Integrating EB Simplex into society

I’ve learnt that one of the biggest remedies is to improve people’s awareness and understanding of the condition rather than dealing with it quietly in the fear that people won’t understand. By sharing this I hope to raise awareness of epidermolysis bullosa simplex for the benefit of sufferers like myself and help in the journey of plugging it fully into society, rather than it living on the periphery.

I hope this help towards gaining a bit more insight into EB Simplex and what it encompasses.

Written by Tom Ridley