Avoiding friction
I lived without a diagnosis for almost three decades
Slipping off my shoes and socks, I winced at the blisters on my heels and toes. Ever since I could remember, blisters had formed over my body.
Even in my mouth and throat.
The slightest friction between my skin and clothes and they’d appear on my feet, arms, hands.
Especially in the warmer months between April and October.
‘It’s probably eczema,’ one doctor told my parents. ‘Thin skin,’ said another. ‘Her skin is too thick,’ one contradicted.
But no creams helped. The kids at school picked on me, made fun of how I walked.
Hobbling, trying not to create friction.
For years I lived with just not knowing why my skin blistered so easily.
Wore vests under my bra, to reduce chafing.
Only wore wide boots in the winter and light, airy canvas shoes in the summer.
Ate soft foods, avoided spicy or acidic meals.
My glands were constantly swollen as my body was always fighting infected blisters.
In September 1998, when I was 27, I was living in London.
I visited my GP about the blisters once again, still hoping to get answers.
But expecting to get nowhere.
So I was surprised when he referred me to a dermatologist.
For the 27 years I’d suffered with my blistering skin no doctor had ever sent me to see one.
‘You have epidermolysis bullosa simplex,’ the dermatologist explained after an assessment.
A rare inherited disorder in which the skin is fragile and blisters at the site of rubbing.
While there was no cure, I was given special dressings that promote healing.
I was also put in touch with DEBRA UK, a charity offering support for those diagnosed with epidermolysis bullosa (EB) simplex.
Finally, I met others just like me.
People who couldn’t eat crisps or curries for fear of their mouth and throat blistering.
And who understood that I couldn’t do simple tasks like washing-up.
Or even share the same cutlery as my partner as I needed thick, rounded knives and forks so they wouldn’t rub my fingers.
‘Can she really not do the ironing?’ he asked, during one meet-up.
Laughing, my friends with EB shook their heads.
Explaining that the clenching of the iron and the steam was a recipe for blister disaster.
It was amazing not to have to explain myself, surrounded by people who just got it.
And after years of feeling self-conscious, my confidence soared.
I even became a burlesque performer and teacher, despite dancing being difficult because of the movement and sweat.
But, over time, I learnt to love myself, and feel confident, if not always comfortable, in my own skin.
‘Your confidence is amazing,’ a friend said. And, it got me thinking. So in June 2019, I decided to set up my communityinterest company.
Teaching self-esteem and confidence to women and children.
I just love helping people. I still can’t eat crisps or hold certain cutlery.
And although I’ve developed other chronic conditions as a result of my late diagnosis, such as damage in my hips, nerves and spine, I’m happy.
And that’s all I can really ask for.
I didn’t know why my skin blistered so easily