By Heather McKelvie

In 1996, my mother and I went the Family Conference, which was in St. Louis that year.  Looking back, I don’t remember very much about it.  Perhaps because I was a teenager, I was in denial about the fact that my EEC was a life-long condition that I would always have to deal with.  I did not want to dwell on the things that made me different, because it made me unhappy.  So I went to the conference not really wanting to admit that I had anything in common with anyone else there.  My mother seemed to get a lot out of the lectures, and enjoyed talking with various people.  I looked around for cute boys and tried to look as bored as possible.  Once we left St. Louis, I didn’t give the experience much thought.

Fast forward to 2011.  After some intense self-reflection, I decided it was time that I stop ignoring the thing that made me most unique.  I had always imagined that one day I would be able to help families of children like myself.  To serve as a role model and an example that with time and perseverance, things work out in the end.  Now was the time for me to get up and do something about it!  I contacted the NFED and found out that they just happened to need a liaison for the New England area.  I also found out it was not too late to sign up for the Family Conference that year.   Before long, I was on a plane bound for St. Louis for the second time in my life.

I arrived at the hotel that evening feeling a little nervous.  I saw a few people with tell-tale ectodermal dysplasia characteristics milling about the lobby.  While standing in line for the check-in, I noticed a family walk in the door.  It was a mother with three kids, the youngest of whom had EEC.  He was smiling from ear to ear and began chasing another boy around the lobby area.  I met the mother’s eye and smiled.  The next morning, I would meet this family again and Jeanne, the mother, would invite me to sit with them at breakfast.  I found out the boy was named Nollan and his older sisters were Audrey and Lauren.  They were all so friendly, and made me feel instantly comfortable.  We talked about everything from where the girls wanted to go to college, to the way Nollan’s hair stuck out at every angle, no matter how they tried to comb it, to our experiences with ear problems related to EEC.  As the conference progressed, I met more and more people, all of whom were friendly and curious to know about me, as well as share their experiences. The environment was like a big family get-together.  I saw kids running around who reminded me of myself as a child, and I saw adults who looked more like me than my actual siblings do.  It was a surreal experience, and one that I will not soon forget.

I would encourage anyone who has the opportunity to attend a Family Conference to do so.  I would expect that if you are a parent of a young child who is newly diagnosed with a form of ectodermal dysplasias, the experience of attending the conference would be life-altering. Where else would you be able to meet so many people who know just what you are going through?  Any questions or worries you have can be answered and your confidence restored by talking to other families there.  If you are the parents of an older child, think of the benefits for your child to meet other children who look similar and who know what it’s like to be affected?  As an adult, I found the conference to be therapeutic.  I laughed and I cried.  I remembered things I had forgotten long ago, and I saw the energy and joy of the children running around and remembered how I was as a child.  I vowed to recapture that energy and spirit and not let my differences hold me back from letting my true self shine at all times.   I’m a better person for having attended the conference, and I look forward to being a part of many more.  I hope to see you in Orlando!

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10 comments on “It Was Time That I Stop Ignoring the Thing That Made Me Most Unique”

  1. 1
    JoAnna Nix on June 18, 2012

    Well said!! =)

  2. 2
    Gina Quintanar on June 19, 2012

    wow HEATHER you are awesome my son doesnt have EEC but seems to be going through alot of things you did as a teenager…this article helped me more than you will ever know!

  3. 3
    Steve Hayes on June 19, 2012

    Hi Heather, My name is Steve Hayes and I also have EDD, I am 42, I live in Stevensville Ontario, Canada and I started to lose my hair at 15. I now shave my head, I’ve had Dentures and Glasses since 2 years old, I’ve had nose operations, I have dry skin and sore finger nail issues in the winter and several other issues related to EDD.As the youngest child of three in our family I have become the most self sufficient by not letting anything stop me. I am getting married in September and My spouse and I who have been together for nine and half years have a 10 year old son, Dakota. I coach him in all his sports and we live a totally normal life. Like you I would like to give the same advice to others. Even with EDD Life is what you make it. Hopefully I can make it to a conference in the future.

    1. 4
      Heather on July 5, 2012

      Hi Steve! Thanks so much for your comment! It is amazing once you start meeting others with EEC, or or other forms of ED, you find a kind of mutual understanding that you don’t get in everyday life. I hope you’re able to come to a conference sometime! Maybe the NFED will have a conference near Niagara Falls, so it’ll be right in your neck of the woods. Congrats on your upcoming wedding!

  4. 5
    Jack on June 21, 2012

    Heather: a great post! Thanks for ‘exposing’ yourself!

    Steve: Like Heather, I am a liaison for the NFED. I am slightly older than you, reaching 60 in July. I know at lease one other Canadian with EEC and my ‘twin brother from a different mother’ (kidding here), Marc, has EEC and is also in his 40’s like you. I would love to continue a conversation with you off line. If you like, email me at Thanks, and Take Care!


  5. 6
    Lindsay on July 5, 2012

    LOVE IT! I’m so excited to meet you and room with you….our stories are similar….only for me I never knew such an organization existed until 8 months ago! I’m looking for answers and support and I also want to reach out to others and help kids and familes with ED…..I’m hoping this conference is the door I can go thru to make it happen!!!

  6. 7
    Pam Wilson Kennedy on July 13, 2012

    Heather, what a beautiful and heartfelt post. Your message is so true and inspiring. Please look for me in Orlando as I would love to get to know you.

  7. 8
    eecchick on November 25, 2013

    Reblogged this on EEC Chick and commented:
    This is a blog post I wrote for the NFED back in 2012, explaining why I think everyone should get to a conference if they can!

  8. 9
    EEC Chick on March 15, 2014

    […] epiphany, I found myself at the NFED Family Conference in St. Louis. I wrote about that experience here. Attending the Conference encouraged me to come out of my shell even further. It was a reminder […]

  9. 10
    Seeking the Solution to Dry Eyes – Part 1 | National Foundation for Ectodermal Dysplasias on August 28, 2015

    […] It was Time that I Stop Ignoring the Thing that Made Me Most Unique […]

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