It’s the third or fourth week in a row I’ve been to the doctors, every three days, to have my feet checked… This was back in the early 1990’s… I didn’t know what it was or what was causing it. My GP at the time didn’t understand it either. Thankfully, after a few weeks of having my feet syringed, she sent me for tests at Queen’s Medical Centre (QMC) in Nottingham where I was at Uni at the time. At QMC they took a skin sample from my right toe, examined it, and shortly after I found out I had a genetic skin condition called Epidermolysis Bullosa (Simplex), or EB (S) for short.
I have blisters on my feet, sometimes 10 or more on each foot, and sometimes on top of each other, and they keep on coming. They are painful, they come from nowhere, and they are not only on my feet! Depending on the clothes I wear and fabrics I choose, tiny little ones, sometime bigger ones, will pop up on my body, hands, chest, anywhere. You see, any slight rubbing results in a blister, often numerous ones under my skin.
Open conversations – anything goes
We talk about all sorts when we ride our bikes – family, friendships, health, travel, literally anything goes – and on this occasion we were talking about drinking alcohol. I mentioned that whilst I enjoy having a drink, and I like the taste of alcohol, my body doesn’t seem to like it very much. Then I shared that I’m pretty sure drinking alcohol aggravated the genetic skin condition I was diagnosed with in my early 20’s (which is when I was at Uni where the alcohol flowed).
I’m sharing this story now because whilst on a cycling trip with some girlfriends in Girona, through my friend Tricia, I learnt about someone else who has EB (S). In my lifetime, outside my family, he’s the first person I’ve ever heard of in my network who has EB (six degrees of separation – in this case less). Moreover, after some WhatsApp messages, I discover I’m the first person he’s ever heard of in his lifetime that has EB (S). It’s not a topic that comes up often and it’s not something I generally talk about, but it is something that’s painful and over the years, has been a challenge to manage. Thankfully I’m getting pretty good at it now. Plus, I have the ‘Simplex’ version so it’s the least severe.
What is Epidermolysis Bullosa (EB)?
I describe it as not having glue between my layers of skin, so when there’s friction, it blisters easily. The NHS, research and support charity Debra, and Wikipedia describe EB as follows…
“Epidermolysis bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters.” Discover more HERE.
“Epidermolysis Bullosa (EB) is a painful genetic skin blistering condition with no cure. Find out about different types of EB, causes, symptoms and treatments.” Discover more HERE.
“Epidermolysis bullosa (EB) is a group of rare medical conditions that result in easy blistering of the skin and mucous membranes. Blisters occur with minor trauma or friction and are painful. Its severity can range from mild to fatal. Those with mild cases may not develop symptoms until they start to crawl or walk.” Discover more HERE.
In March 2004, Channel 4 made a moving documentary about Jonny Kennedy, ‘An extraordinary man with a terrible condition – Dystrophic Epidermolysis Bullosa (EB) – which means his skin literally falls off at the slightest touch’. I recall watching this emotional documentary, feeling shocked, and also very lucky to have the mild version as it’s manageable.
My strategies and tactics for managing EB (S)
Over the years, through trial and error, I’ve discovered many strategies and tactics for managing my EB. I’ve also discovered many brands, fabrics and products that make every day manageable.
For cycling – my top five tips to avoid blisters
I cycle a lot, often multi-days rides. And yes, I’ve had very painful blisters there too. BUT (pardon the pun) there are many ways to make cycling achievable. It is about prevention, not cure. Here’s my top 5 tips…
- Shorts – Get a pair with a good pad, ideally a chamois for long distance. My preferred brand is Stolen Goat as these shorts are amazingly comfortable, the seams are in the right places, there’s no horrible plastic at the bottom of the legs, and the fit is brilliant.
- Chamois Cream – In the UK I buy a product called Chamois Butt’r (pH HER), a pH balanced anti-chafe cream for women. I put it on before every ride, directly onto my skin, not the chamois (that’s my personal preference).
- Leg / Knee Warmers – These are a brilliant piece of kit, however make sure to get these with minimal seams and minimal rubber (avoid the pairs that have a line of rubber at the bottom to keep them in place on your shin, they are blister makers).
- Sports Bra – If you are blessed with a chest, get a shock absorber. They keep them in place whilst being kind to your skin. Avoid anything tight that will pinch your skin.
- Gloves / Mittens – I wear gloves or mittens all year round when I cycle to protect my skin. I tend to stick with Castelli, they are made well, good fabrics, and often have a little bit of padding to make it more comfortable by absorbing some impact over any bumps, on and off road.
For everyday – my top three brands that make my life more comfortable
1 – FitFlop
Without them knowing it, this brand has saved my feet and my sense of humour on many occasions. Without this brand I don’t know what I’d wear on my feet. Via my LAKES cycling shoes, this is the only brand that goes on Potter Trotters.
Why? It’s the Wobbleboard Technology. Over the years they’ve launched new sole technology to suit different customers. For me, the wobbleboard technology has been a game changer. Again, through trial and error, I’ve worked out that this is the product that works for me – in spring, summer, autumn and winter – flipflops, shoes and boots. Discover more HERE.
2 – Freya
Yes, I’m talking about underwear, bra’s to be precise.
Why? For women our underwear is important and it has to be numerous things – comfortable, feminine, pretty, come in lots of colours (white, beige, black being the basics, and colourful too – who doesn’t love wearing something fun, fresh and funky? Freya achieve everything, the underwire is in the right place and it provides support where you need it, they’re well made, and the fabrics are super soft and kind to my skin. They as make great swimwear too! Discover more HERE.
3 – BAM
Now I’m talking about socks, the super soft, sustainable kind.
Why? This product is another revelation… super soft, amazing array of colours and choice, fun and funky designs, a product for every day wear! They are more expensive than other brands, yet they are worth every penny. If you have to be on your feet all day, these are a must to have happy feet at the end of the day. Discover more HERE.
Living with EB (S)
Having EB (S) doesn’t rule my life, but it does impact what I choose to do and what I choose to wear on a daily basis. THANKFULLY it’s automatic thinking now so I don’t notice it so much. I’m luckily that I am able to exercise as it’s something I enjoy. I can’t do gym classes as I get blisters doing burpies and the bleep test, and I can’t run because that’s too much impact and friction on my feet (that’s a blessing really as I’ve never been a fan of running #silverlining).
For exercise, I ride my bike (slowly), I walk (short distances), I swim (bob about in the water doing my own kind of swim stroke, I would never make it across the channel), and do yoga (not so bendy these days so there’s room for improvement) – all of these activities I love.
What gets to me most is the low-level pain, it is tiring, can make me short tempered and it can make me go quiet, when what I’d really like it to do is ‘stop’.
Thankfully, as I get older it seems to be getting less painful, perhaps I’m becoming a master of managing it? Either way, if someone reading this has EB (S), I hope some of what I’ve shared is useful.
Photo – My feet in the New Forest, Pink Toes in my FitFlops