It’s #rarediseaseday - and I’m one of the 1 in 500,000 in the whole world living with Epidermolysis Bullosa. EB is a genetic skin disorder that causes blistering all over the body. I have the junctional EB - which affects my skin, nails, teeth (and recently as I age, my hair 😬). It’s extremely painful and affects my mobility quite often - there is currently no cure for EB. What causes it is the lack of protein between the skin layers to keep it fused, and for me, that means every little thing can traumatize my skin- it can be as little as brushing up against something that any other person wouldn’t think can cut skin, or it can be wearing the wrong item of clothing.

In the past year I picked up running again - which physically speaking was probably not the wisest. I ran the first half of the year on blisters all over my feet, and I showed up to sessions powering through the pain (and often times limping) - but now I’ve trained enough that my skin and tolerance has increased? I’m stubborn so this has really been a big mental game too if I’m being honest. But I’m so profoundly grateful for photography and how I’m able to manage navigating my disease, staying active, all while having a fun career. Some days are dark because of the pain - but I don’t really know an alternate reality - and I’ve met so many others from all over the world living with EB so I’m keeping on my feet and creating while my body allows it!

Serene

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