The hidden side of EB – Sarah’s story

Sarah Kay lives with epidermolysis bullosa simplex (EBS), the most common type of EB. Sarah shares her story about growing up and thinking of her EB as simply the ‘Kay’ feet, to receiving a diagnosis and finding DEBRA UK. She also highlights the mental health struggles of living with a hidden disability.  

“My EB might not always be visible, but the physical and emotional toll is all too real. I’m not alone in this; my dad, brother and uncle all have EBS too. Symptoms change throughout the year, often worsening when it gets warmer, which makes it hard for others to understand the constant, unpredictable challenges of living with EB.  

The daily restrictions of EB 

Living with EB forces you to make sacrifices every day that others don’t even think about. Simple activities like walking, require careful planning because it’s so painful. Say I’d like to go to London for the day with my family, I can’t always walk between tube stops, especially on a warm day. A day on my feet can lead to a prolonged period in a wheelchair and certain shoes aggravate my blisters more. It affects not just me, but my family and friends, who must adjust their plans for me.  

I’ve also had to think about this sort of thing when planning holidays like my honeymoon. We’ve had to think about when we can travel, as I can’t go in the summer months as it’s not possible to walk far in the heat. 

The constant pain leads to negative thoughts. As a teacher, I can’t afford to develop blisters that make standing or walking nearly impossible, which adds another layer of stress. Excruciating blisters can form and if walked on, they can spread, balloon up and cause huge crevices on my feet which take a long time to heal. You can also end up walking in a funny way to counterbalance this, and I’ve torn tendons from this.  

Receiving a diagnosis 

Through DEBRA UK, I’ve connected with others who have EB which makes me feel less isolated, and I’ve been officially diagnosed with EB, which has been empowering and life changing.  

Before DEBRA, I didn’t have the words to explain my condition. Growing up, I constantly thought, “what’s wrong with me?”, I felt inadequate, and I thought it was just me and that I wasn’t very good at walking. Now I can say “I have EB” and I have accepted that I cannot do certain things. It’s given me the ability to explain my condition and be kinder to myself. 

I’m thankful that my EB is only isolated to my feet, but it’s still frustrating. Blisters on your feet don’t necessarily sound that bad, but now I have my diagnosis, I feel I can be kinder to myself and say, “I can’t do this because of my condition” and people are much more accepting of it.”