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My Experiences of Living with Chronic Conditions. Part One.

Updated: Oct 19, 2021

When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible.

A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.

And I thought I would do them as chronologically as possible. I’ll combine some of them, because that makes sense to me.

The beginning.

I, obviously, don’t remember being born, but I remember being told that, when I was born, my bottom was raw. 

I was told that I used to get a bad nappy rash frequently. Over the years, cuts and scrapes were always far worse than the accident warranted. Following activity, and whenever I got hot, my feet would blister.

Because we’re told not to pop blisters, as that increases the risk of infection, mine would get bigger and bigger, engulfing all of my toes, or my entire heel. The skin on my hands would frequently be sore. When I had fixed braces, my mouth was covered in, what were thought to be, ulcers. The slightest exertion would make me sweat, which I always found incredibly embarrassing, concerned people would judge me for being unfit. That added to the embarrassment of walking around like a constipated chicken because of my blistered feet a large part of the time.  

On the rare occasion (more about that another time) I was taken to the doctor about it all, I was misdiagnosed. I got diagnosed with a few different types of eczema (one where I was told to soak my feet in potassium permanganate, resulting in brown stained feet and nails!); I got told the skin on my feet was too soft; I got told the skin was too hard; I got told I was allergic to my own sweat (which added to the embarrassment of sweating so much already; I felt it was all my fault). 

During the summer, I would end up wearing cheap men’s flip flops, as my feet got too swollen for women’s shoes, even though gripping the flip flops caused more blisters. When I was alone, and not likely to get told off, I would go barefoot as often as possible, even outside.

Once I left home, I could take myself to the doctor; I saw several, each giving a different diagnosis. Nothing they prescribed helped. Then I got referred to a dermatologist at Chelsea and Westminster Hospital. I sat down, showed him my feet, and he said, “You have Epidermolysis Bullosa Simplex Weber-Cockayne!”. In my usual eloquent fashion, I responded with, “Huh?” He said my feet were such a good example of EB (much easier to say than Epidermolysis Bullosa) that he sent me to the photography lab; my feet are in a medical journal!  

I began to learn more about the condition. The NHS explanation of EB, and the symptoms they state, are: