I am affected by a rare condition known as ectrodactyly ectodermal dysplasia clefting syndrome (EEC). I was born with a complete bilateral cleft lip and palate, missing fingers and toes, as well as a lack of sweat glands and dental enamel. This means I’ve had lots of surgery and dental work and am constantly battling dry everything- skin, eyes, mouth, and hair. Oh, and I can overheat easily.
I’ve always felt that EEC is only a small part of what makes me, “me”, but in recent years, after having met several other people who are also affected by EEC, I’ve realized just how big a role this condition plays in the life of all those who are affected.
The goal of this blog is to raise awareness of the ectodermal dysplasias, to provide support to others who are affected and to simply give me a place to write about my journey and possibly get some feedback on it.
Other things about me that aren’t necessarily related to EEC: I’m an artist… I love to create, whether it be drawings, sculptures or written work. I’m also a gardener who finds zen in pulling weeds.