Porsha:

EB affects pretty much every part of my life. I had to choose a career where I was not always on my feet, I can’t walk too much and if I do, I end up bedbound or needing the help of a wheelchair for days afterwards. From a young age my mother always told me that I need to focus on getting an office type job to cope with my EB.

When I was younger my mother studied aged care, she was passionate about working in the care sector, particularly in in-home care. She was rejected from completing her placement due the company having concerns about her EB affecting her ability to walk around the aged care facility and was told “not to come back”. I was so disheartened when that happened, I was worried about what would happen to me when I entered the workforce and how people would judge me when I told them I had EB.

I never had any support from doctors. All that I learnt about caring for my EB was passed down from my grandfather.  I was recently referred to a wound care specialist who put sticky bandages on my feet which caused even more blisters and damage. I am still currently waiting to receive a formal diagnosis of EB.

As a child I was bullied a lot. It’s probably why I now work in social work; I want to help those who are disadvantaged.

In primary school I wore thongs every day as enclosed shoes hurt my feet. Once I started high school, I forced my feet into ‘normal shoes’ to fit in. My mum explained EB to the teachers but they didn’t believe her, they said I was just ‘lazy’ and made me do sports even when I had blisters.

I’m sharing my story because I want to reclaim my narrative from all those who dismissed me as lazy or judged me for being different. I am proud to be taking back my story and improving my quality of life and confidence.

I’d like to tell all those struggling with EB that some days will be worse than others, you need to prioritise yourself and not focus on what others may think about you. You’ll be just fine. There is a support network of others with EB there to help you, just reach out.

Sharon:

Sharon is one of four children and the only one with EB. When Sharon was younger, she also wore thongs to school and was often carried to school by her mum as she could not walk the distance. Sharon took part in athletics while in school but would often be bedbound after participating.

Sharon had to take on casual jobs as she was unable to be on her feet for long periods of time. While working in a kitchen Sharon had to sign an agreement stating she could wear open toed shoes and that any workplace injuries to her feet where her responsibility.

When Sharon found out she would be unable to complete her aged care course she was angry. She called the company to speak about it and was told she should have never started the course if she could not complete it. Sharon now sees that looking back this was discrimination.

Porsha – 

I’m sharing my story because when I was younger no one had heard of EB and I had no one to speak to about it outside of my family. I want to bring awareness to the condition.

I’d like to tell all those struggling with EB there will be ups and downs but remain positive, you can still have a great life.