By Julie Kennedy

Julie (right) poses with Meagan (left) and Kenzie (center). Both daughters had bone grafting from their hips into their alveolar ridge, followed by implants and crowns and bridges. Megan had her maxilla cut off of her skull literally and brought forward and down with many screws and wires.

Thirty years ago, my family began the journey called, “life with ectodermal dysplasia.”  We didn’t know it at the time, but my husband had tooth and nail syndrome.  Many in his family had it, but it was just shrugged off as weird shaped and missing teeth, a “Kennedy Thing.”  It was not discussed so my husband and I were truly in the dark.

Our Daughter

When our first daughter’s teeth started to come in, pegged shaped and many not coming in at all, we were assured by our much loved but not a well-informed dentist that she was fine. I was in nursing school at the time. A geneticist from the University of Iowa came and spoke to our class. The last thing she touched on were rare disorders involving missing and pegged shaped teeth. It was then that I began to learn about ectodermal dysplasia.

I called the National Foundation for Ectodermal Dysplasias (NFED). They were absolutely instrumental in the beautiful outcomes that my now grown children have experienced. Among many things, they gave me information on obtaining insurance coverage. I fought and my hospital covered all of their treatments under their medical plan. This was easily $100,000 per child – temporary partials, braces, implants, crowns, bridges, bone grafting, etc. Four of our five children are affected.

The NFED is Invaluable

This is our son, Alex, who also had to have the bone grafting, dental implants, crowns and bridges.

The wealth of information and support the NFED supplies are invaluable. They assisted me in finding the correct dentists, oral surgeons, and prosthodontists who dealt with ectodermal dysplasia. They also gave me information about the psychological and social impacts.

Even in our own family, I was chastised for “opening a can of worms” when I looked into this “Kennedy teeth thing.” Now, I have been able to help the next generations who have been affected. Knowledge really is power.

I can not overstate the importance of talented and knowledgeable providers to obtain a beautiful restoration. The NFED gave us the tools to understand ectodermal dysplasia and find treatment teams.

Truly said, my kids couldn’t smile without the NFED!

Our three daughters are all affected with ectodermal dysplasia. The middle one, Maddie, is the least affected of our four affected children. She did not require bone grafting and was only missing 14 teeth. She has dental implants, bridges and crowns.

One comment on “Life with Ectodermal Dysplasia”

  1. 1
    Tracy on March 16, 2017

    I would love to get in touch with this adorable family! just found out yesterday that my daughter has ectodermal dysplasia! I would love to chat with your adorable family ❤

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