By Carrie Conklin
Attending the Family Conference has made all the difference for us. Before my son was diagnosed, I had never heard of ectodermal dysplasia and had no idea what this meant for my son, Noah, and for our family- short term or long term. Going to our first Family Conference gave us an almost immediate sense of community and a place to learn more.
My family was immediately welcomed into the larger National Foundation for Ectodermal Dysplasias (NFED) family. The conference was a warm and comfortable place to get to know other families like ours. At the conference were people who understood our concerns and issues and who were dealing with the same things. There were individuals and families who had a lot more experience with ectodermal dysplasia than we did and they were happy to share their best tips, tools and tricks for…well, everything!
The Family Conference is an amazing place to learn and a wealth of information about medical, dental, social and educational issues. We learned from experts (and continue to learn) about genetics, dermatology, dentistry, ophthalmology and more. We learned about advances in the research on ectodermal dysplasias. The education we have received at Family Conferences has empowered us to make informed decisions regarding our son.
But the very best part of that first conference for me and one of the reasons we keep going back to the Family Conferences was that my son found other people who looked like him, didn’t sweat like him and people who had teeth and dentures just like him! It did my mama heart such good to see him with this amazing sense of belonging.
It also did my heart good to see people of all ages, kids, teens, adults, living and thriving with ectodermal dysplasia and to know that my son would do the same.
– Carrie Conklin is a guest blogger for the NFED. She is the mother of a son affected by ectodermal dysplasia and is a volunteer on the 2018 Family Conference planning committee.