Having ectodermal dysplasia can be hard. Especially growing up. I had never met another person with ectodermal dysplasias until I went to my first National Foundation of Ectodermal Dysplasias (NFED) Family Conference in 2014 at the age of 46. I had always felt alone.
I don’t know which type of ectodermal dysplasia I have. I’ve never been genetically tested. My main symptoms are my teeth and hair. I sweat but not a lot.
When my adult teeth didn’t come in (because I don’t have a single one) when I was two years old, my dentist guessed I had ectodermal dysplasia. I was taken to the University of Washington where they basically said,
Yup, she has ectodermal dysplasia. Take her home and make her comfortable. There is nothing we can do. She will be developmentally disabled for the rest of her life.
My poor mother didn’t know what else to do. She was alone.
My First Family Conference
My first conference was emotional, to say the least. Here were all these people with ectodermal dysplasias. Some cases were mild. Some were severe. It was overwhelming.
Since I can “pass for normal,” many there thought I was a parent of an affected child. One particular session was filled with tears as each of us told our story. Our years of frustrations came pouring out. We had all felt lost…and alone.
I met two other adults who were there by themselves as well. We shared a lot of things in common. We’d each come for answers. “Do you get colds a lot?” “What about joint pain?” “Do your eyes water when you cut onions?” For the first time, we were not alone.
I Don’t Have to Hide
Since I now wear hair pieces and have my dental implants, I can pass for “normal.” I’ve been hiding for almost 50 years. So, the thought of completely coming clean is terrifying for me. I’m afraid people will go back to treating me like I’m “a weirdo.” So, I continue to “hide.” But at the Family Conference, everyone was in the same boat. I didn’t have to hide. I wasn’t alone.
This year, I’m looking forward to attending the NFED Family Conference again. One main reason is that it’s within driving distance so it makes sense financially. Another reason is that we are going to Advocacy Day on Capitol Hill to try to get insurance coverage for those with ectodermal dysplasias.
It’s a VERY expensive disorder: dental work, hair pieces, cooling vests (I overheat, but I sweat, so I don’t have to wear one of those), genetic testing, missing work because of all the time I’m too sick to work.
It all costs money and none of it is covered by insurance. It’s such a rare disorder that I’ve never even had a doctor know what I’m talking about. But, at the Family Conference, we will all be together! We will NOT be alone.
So, if you’ve been on the fence about attending an NFED conference, take the leap. If you’ve shed tears over you or your child being bullied at school, come be with others who will understand. If you’ve fought with insurance companies over “cosmetic” dental procedures being covered so your child can chew food and talk normally, come stand on Capitol Hill with us and be heard.
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We will be TOGETHER to be STRONG because we will be UNITED and we will NOT be ALONE!