By Vie Portland

 

As a child, I would get large blisters on my feet and normal childhood wounds would be different to my siblings, rawer, blistered, and taking longer to heal, especially during the warmer months. As a teen, wearing braces on my teeth, my mouth was full of what the dentist thought were ulcers.

"It’s probably eczema" one doctor told my parents; "Thin skin", said another; "Her skin is too thick" another doctor contradicted; “She sweats too much” another said. Nobody really knew what it was, and nobody suggested I see a dermatologist.

I was given creams, but they did not help. 

I frequently hobbled, trying to restrict the number of times the blisters touched the floor; if they were mostly on my toes, I would put my weight on the heels; if they were on one side, I would walk on the other side. The children at school noticed and I was often mocked.

For years, I felt alone. I didn’t know anyone else that lived with whatever it was, and no-one understood it. 

Then in September 1998, when I was 27 and living in London, things changed.

I visited a new GP, hoping to get some help with my blisters; I was hopeful but not confident, as I had been here many times before, longing to get a breakthrough and some answers. But, this time, I did get a breakthrough! I was referred to a dermatologist!

The dermatologist took one look at my feet and said, “You have Epidermolysis Bullosa Simplex Weber-Cockayne.” “Huh?” was my response.

The dermatologist explained that it is a rare genetic skin condition where the skin is fragile and prone to blistering. The dermatologist advised me that there was currently no cure, but I was given special dressings and told about DEBRA.

I wasn’t alone! There were people like me! I finally belonged somewhere!

Over the years I have come to know and love many of the EB community. I learned that many of the things I have struggled with were not just my oddities; people who also struggled with particular foods because of them causing their mouth and throat to blister; people who struggled with holding particular things; people who couldn’t iron (I will admit this one doesn’t bother me in the slightest!)

Finally, being able to share these experiences with other people who faced the same challenges with daily living was a huge relief. It was amazing not having to always explain myself, as I was now surrounded by people who just got it. And after years of feeling self-conscious, it was my first step to accepting my disability, and accepting who I was.

Due to not being diagnosed until I was an adult, walking on blistered feet caused other issues in my body - thoracic outlet syndrome, bursitis, peripheral neuropathy, spasms - and, living with the family I had, having the experiences I had, I also had mental health conditions. I got as low as a person can go. I knew I had to make a choice as I could not stay the way I was.

I decided to take on challenges that were out of my comfort zone. I started dance classes, even becoming a burlesque performer and dance teacher, despite dancing being difficult due to the movement and sweat accelerating my blistering. 

As well as teaching adults how to dance, I was teaching myself how to feel good. Over time I learned to love myself and feel confident as me. And, as I was teaching myself, I was teaching the people in my classes.

People could see how much better people were feeling from working with me and they asked me to teach them how to feel good too. I started teaching confidence workshops, using my psychology degree, and counselling qualifications; it became apparent how many issues start in childhood; I decided to use all my years of working with children and young people to start reaching them before the issues became so big by setting up my own community interest company so I could teach in schools and groups.

I really love what I do! I love seeing the joy in the participants as they realise how wonderful they are; I love the enjoyment people get from my books and cards; I love giving talks about my work, my life, my conditions; and I love how, as I have become more confident, I am happy to talk more about disability and helping others become more inclusive.

Yes, my life can be limited with the things my body will not allow me to do, and I am in constant pain of varying levels, but I can say my life is happy and that is the best thing to ask for.

Vie Portland

 

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The DEBRA community support team works with the EB community, healthcare, and other professionals to improve quality of life for people living with EB. They offer support, advocacy, information, and practical help at every stage of life. The DEBRA Membership scheme includes holiday home respite, grants, and bespoke events to support people living with EB. For more information, please email [email protected] or call us on 01344 771961.

 

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The EB stories blog on the DEBRA UK website is a place for members of the EB community to share their lived experiences of EB. Whether they have EB themselves, care for someone living with EB, or work within a healthcare or research capacity related to EB. 

The views and experiences of the EB community expressed and shared through their EB stories blog posts are their own and do not necessarily represent the views of DEBRA UK.  DEBRA UK is not accountable for the opinions shared within the EB stories blog, and those opinions are of the individual member.