When I was born, apparently I had a very raw bottom. Over the years, I would have large blisters and inexplicable wounds; I was called “weird”, “a freak”. I got misdiagnosed several times: it’s eczema, your skin’s too hard, your skin’s too soft, you’re allergic to your own sweat.
Finally, just before I turned 28, I was diagnosed with EB. And my world opened up! I was finally part of a community who understood my condition, who understood why some things really hurt, who understood how much we needed to be hyper-aware to protect our skin.
Unfortunately, due to late diagnosis, from walking on blistered feet for years, from trying to prove I wasn’t “a freak” by doing everything others did, I also have other chronic conditions that affect my nerves and joints, adding to the pain caused by EB.
However, I live a full and happy life. I run my own Community Interest Company, teaching self-esteem and confidence workshops to children, young people, and women; I’m an author of inclusive children’s picture books and positive growth books for adults; I create happiness products; and I’m a motivational speaker, including talking about my disabilities and how everyone can be more inclusive.
And I’m very grateful to be part of the EB community!
