By Terri Andrews
I was born in a little rural area in Alabama in 1959. Not much was known about ectodermal dysplasia nor the type of ectodermal dysplasias I was born with called ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. If I received any type of major treatment or surgery, I had to travel at least 100 miles, which was not always easy.
When I found the NFED in my 50s, I only knew a little about EEC from some papers that a surgeon gave me when I was in my 20s. The NFED has been my life saver, giving me valuable information and meeting others with ectodermal dysplasias, especially with EEC. They have become my family. I finally knew I was not alone. There were others like me.
I asked the NFED if they had educational awareness material to give out about ectodermal dysphasia and they did. When I received them, I passed them out to every doctor, surgeon, and dentist I went to and I also told them about the NFED. I wanted to get that information out there in Alabama for us and future children affected by ectodermal dysplasias.
When Lea at the NFED asked me if I would help with the Combined Federal Campaign (CFC) in Alabama, I was excited. I wanted to tell as many people as I could about ectodermal dysplasia and about the NFED.
I wanted to get the information about ectodermal dysplasias and the NFED out there! There were lots of people who came by my table and seemed really interested, even doctors and nurses. I don’t know if anyone signed up, but my main purpose was to get the information out there – create awareness about this wonderful foundation and all it does for people affected by ectodermal dysplasias as well as what ectodermal dysplasias are.
Last year, my daughter and I headed up the Global Huxman Run 2 Sweat in my area to raise money and awareness for the NFED. It was a lot of work but fun at the same time. What made me happier than anything was the passion my daughter had in getting this all together. It made my heart swell with love.♥
This year, I became an NFED family liaison for Alabama. I want others in Alabama born with ectodermal dysplasias to know that they are not alone…they have someone to talk to, ask questions, or whatever.
I remember when I thought I was the only one out there and I don’t want anyone to feel that way. I know since I have met others with ectodermal dysplasias, it has made me more confident, because I know I’m not the only one.
That is why I became a volunteer through the NFED’s Helping Hands Volunteer Program. I was so overwhelmed with love and belonging from the people who work at the NFED that I wanted to share that love with others along with the information that they have given me.
Check out these other NFED blogs about families who choose to give back:Share Your Story