By Joanne Bharatan

My name is Joanne, I am 57 years old, and I have dystrophic epidermolysis bullosa (DEB).

EB is there in my very first memory. I must have been 4 years of age, sitting on the concrete floor in the backyard of our house, heavily bandaged with a butterfly perched on my big toe. How strange that this memory is so vivid, since the butterfly has since become so synonymous with EB.

EB was there with me then and has been with me ever since. Some things have changed; thankfully the quality of dressings has improved now, but the pain is the constant.

Not just the physical pain but the mental pain too.

A lot of my earliest memories have now gone, blocked out because they are too painful to process. I do however remember falling over and losing the skin from my hands, my face, my legs, and my elbows. I remember the painful process of digging out the grit and dirt that had become imbedded in my wounds.

I also remember the cruelty and psychological bullying I experienced at school; “scabby” was a popular nickname directed at me. 

I was treated differently, but I didn’t want to be different. I felt rejected because I was different, and I was different because I had EB.

I tried to find a release from the physical and mental pain of EB through faith, but only felt more rejected.  My family explored faith healers and Chinese medicine for a remedy for my condition and the pain, but nothing could take it away.

For many people with EB, including me at times, it is an invisible disease. Dystrophic EB is one of the more severe types of EB, but it’s not always obvious; other people can’t always see it, but the physical and mental pain is constant. It is like being tortured silently.

I haven’t let EB define who I am, I was told as a child that I couldn’t dance because of my EB, so when I was in my twenties, I took tap dancing lessons, despite the extreme pain that it entailed. I was told I shouldn’t work with children, but I became a metalwork and woodwork design technology teacher because I found helping others to be a huge release. I have travelled worldwide, and lived in the USA, Cyprus, UAE and Malaysia – so the Big Apple to desert to jungle. I also learned how to scuba dive, sail, and drive a huge combine harvester. I am a Neurodiversity Specialist and assessor with the Royal Navy now, helping service people progress through their studies and career, and whilst I didn’t let those limitations put upon me when growing up block my career, hobbies or raising my family, I could never truly escape the torment and excruciating pain of having EB.

Throughout my life there has always been a lack of awareness and understanding of EB, like being incorrectly told by the doctor that my unborn child wouldn’t have EB because it couldn’t be passed on (thankfully neither of my 2 children nor 3 grandchildren have EB), or the doctor who asked me how I caught EB. EB is genetic! Hopefully this is beginning to change though with the increased awareness that the Graeme Souness channel swim has generated.

The pain of EB is always there, though, even if more people know about it and understand it.

EB has scarred me physically and emotionally, both the physical pain, and daily feeling of walking through hot embers, the uncontrollable itching from healing wounds, and the emotional pain which manifests itself through bouts of severe depression built up from years of physical and emotional trauma. EB has caused untold damage to my relationships, and years of constant pain have taken me to the very brink of wanting to end it, more than once.

I eventually found DEBRA, and through them, I have met other people who have EB, and people who I can talk to and share ideas with, without feeling the shame I carried as a child. This has really helped, and I just wish I had found them earlier in my life.

In the future, I hope people with EB get the treatments they so desperately need and deserve, treatments that will help stop their physical pain. I also hope they get the emotional mental health support that is so desperately needed because people shouldn’t have to live like this.

Please, please support DEBRA.

 

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If you need support with your mental wellbeing, Togetherall is a free mental health service available to DEBRA members that enables you to share experiences, listen and be heard in a safe, anonymous space and gain support from a confidential community of real people. DEBRA members can also access courses, practical wellbeing tools and resources 24/7. For more information or to access Togetherall, please visit https://www.debra.org.uk/togetherall-online-community-support 

DEBRA’s experienced Community Support Team are also here to provide emotional and practical support for members and their families living with all types of EB across the UK. They can also signpost towards further psychological support. Please contact [email protected].

If you live with EB and want to find out more about the genetics of EB and how this may affect any family planning decisions, there is information available on our website. Your EB clinician will also be able to answer any specific questions you may have.