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....
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
flair 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 toe nails, 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.
If you'd like to find out more on the condition there's a lot of stuff out there on Google, and DEBRA, the charity for EB, does a lot of work on the condition. Or feel free to get in touch with me.
Hope this help towards gaining a bit more insight into EB Simplex and what it encompasses.
If you'd like to find out more on the condition there's a lot of stuff out there on Google, and DEBRA, the charity for EB, does a lot of work on the condition. Or feel free to get in touch with me.
Hope this help towards gaining a bit more insight into EB Simplex and what it encompasses.
Tom Ridley
Well said, as a fellow simplex sufferer, your description is spot on. It can be so debilitating at times that people can’t understand how quickly it can flare up. Constantly being asked if I’ve just worn the wrong shoes or is there a cure...only if they can replace all my skin! Thanks for wording it so well.
ReplyDeleteI do not have eb. My husband, son and grandson have it. My grandson is very athletic as well. Loves baseball. It just breaks my heart to see him hurting while in the middle of a game, he gets blisters and almost breaks down and cries. He is now 12. Anything you can think of for him to do to get less blisters while playing sports will be a tremendous help. My husband and son did not do sports mainly because of eb. This disease takes away a lot of enjoyment from peoples lives. I hate to see him suffer. He is like you in that he wears his slides in between games or in the summer. Any advice will help. Thanks for sharing.
ReplyDeleteHave you been in touch with the charity DEBRA? They have a lot of resources on pain management. Every case is different but management is key, and although your grandson can continue with normal activities and passions, there are adjustments and measures that can help manage the condition.
DeleteVery well written. I resonate with so much of this. I live in Georgia, USA and get season depression disorder in the summer because the temps are 100+ F with humidity and I just cannot withstand those conditions. Unfortunately I passed this horrid disease onto 1 of my 3 children and it breaks my heart everytime he gets a blister. My father's side of the family all has this so growing up in a small town everyone knew I "got blisters." When I moved to a bigger city, no one believed me. I didn't get a diagnosis until I was mid 20's so that was a challenge. When I finally found a specialist for EB, it was like a breathe of fresh air.
ReplyDeleteMy dad said that when he has to go somewhere (he likes Nascar) he takes a cooler of ice water and he will stop periodically and stick his feet in it. I haven't tried this yet but sounds pretty smart to me. I, too, wear sandals all year round.
Thank you, so pleased you've been able to resonate with this.
DeleteInteresting! My husband and my 2 sons have EBS. They get blisters mostly hands and feet, but anywhere on their body. I use epsom salts in baths for my kids and CeraVe lotion seems to help to a degree. I have never heard of formaldehyde or botox as ways of prevention. Can you expound on why and how those work?
ReplyDeleteHi Julia, both formaldehyde and botox were unsuccessful and had no impact on preventing blisters, but I included it in my article to emphasise the extent we have gone to in order to try and prevent the condition.
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