I Am Not My Diagnosis

My name is Lexie and I was diagnosed with hypohidrotic ectodermal dysplasia (HED) at 18 months old. As the first and only one in my family who is affected, growing up, I didn’t realize that my diagnosis really made me different. It wasn’t until one day in kindergarten when I saw a poster of a “Lost Tooth Chart” and realized that for one, I hadn’t lost any teeth, and two, I only had a few that I could lose relative to my peers.

Lexie's grade school photo where she has a bow in her long blue hair and is smiling. She has a gap between her two front teeth.
The gap between my teeth bothered me growing up.

Excitement at the loss of my first baby tooth and putting my name on the chart quickly turned to disappointment as unlike my friends, the adult tooth never came in. I was left disheartened and with a gap that made me feel different from my friends and family. At four years old, you can’t help but feel discouraged when everyone around you is achieving a milestone that you couldn’t achieve.

Luckily, I grew up with an incredible support system and my parents consistently reassured me that though my teeth were different, they were always “an easy fix.” As I got older, my parents educated me on my condition and on things I couldn’t do that my sisters and friends were able to do. Though I couldn’t play tennis or partake in many sports in the Arizona summer because I didn’t perspire, I was able to spend ample time in the pool and always found solace in learning.

The wonderful thing about knowledge is it knows no appearance and stays with you forever. I always told myself that I could be called names or be bullied, but nobody could take away my brain.

I found that my education gave me a source of fulfillment that I lacked in other realms.

Feeling the Gaps

But as I grew into my adolescent years, my teeth became a more sensitive subject for me and I was willing to do anything to appear “normal.” I got my first set of braces at 14 and my orthodontist was able to mend fake teeth onto my braces so when I smiled the gaps were filled for the first time.

As all my friends got their braces off and posted the photos of what they looked like without braces, I knew in my heart my experience wouldn’t be the same. The day I got my braces off, I lost the fake teeth that came with them and I was mortified by my appearance. I didn’t go to school for two days, trying to cover up what I looked like.

I was fitted for a flipper (a removable partial denture) and about 10 years later, a full set of bridges (dentures) and veneers, and I have been able to smile big again. My dad was right – teeth are an “easy fix.” Nevertheless, I still felt shameful of my condition up until 2021.

Lexie is smiling to show her teeth which are treated and no longer have a gap. She has long brown hair.
Here’s my smile after dental treatment.

Accepting My Diagnosis

For a long time, I kept my diagnosis to myself as I was trying so desperately to fit in with others and I knew that disclosing it would make me feel different. I wish I turned to the National Foundation for Ectodermal Dysplasias (NFED) during these times, as I desperately needed a support system that made me feel proud of my condition.

Knowing how many people are out there with similar experiences as me transforms any ounce of shame into pride. As I grew into my 20s, I’ve been working on being more active in this community, as ectodermal dysplasia is a core part of my identity that I am now so proud of. Trying to cover up your differences during high school and college to feel a sense of normalcy is something I’m sure many of us go through, but learning that our differences are what makes us unique is a beautiful experience.

Lexie is wearing a red halter dress with sunglasses on the top of her head. She's smiling to show her beautiful teeth. There's a bush in the back with pink flowers.

You are Not Your Diagnosis

I know that I was put on this planet to smile from ear to ear and inform others that just because we look different, doesn’t mean we aren’t worthy of valuable friendships, unconditional love, and great depths of knowledge. Nobody should diminish their self-worth to a diagnosis.

Even though it’s scary to hear you’re different at first, it makes you one of a kind.

All the name-calling and that feeling of “otherness” that at times burdened me, motivates me to go into this world and try to treat others with ultimate kindness, knowing how awful it feels when someone chooses the opposite.

There are so many things with this condition that I can’t control, but I try to focus on the things I can control: kindness and gratitude-two things one can never give enough of and never run out of. It’s hard not to feel jaded by the world some days and question “Why me?” but just keep in mind, teeth are easy, and though your condition doesn’t define you – it helps make you, you.

Lexie is a guest blogger for the National Foundation for Ectodermal Dysplasias.

Would you like to share your experience with ectodermal dysplasia? We’d love to work with you.

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8 comments on “I Learned Our Difference Makes Us One of a Kind”

  1. 1
    Cyprian Katongo Jr on November 15, 2023

    Very powerful

  2. 2
    Thomas Scalfaro on November 15, 2023

    Thank you, my son is 4 years old and I am struggling with how to deal with this, he only has 7 teeth, and they came in in at points. He just started school and the kids call him “shark teeth “. And it’s affecting him negatively. I’m working with specialists to get him dentures, but it does nothing for his confidence. Please help us.

    1. 3
      Jodi Edgar Reinhardt on November 30, 2023

      Hi, Thomas. I hate to hear that your son is being called names. It’s incredibly painful when your child is made fun of. You are doing the right thing to get him dentures. We have seen many times over how teeth have given people affected by ectodermal dysplasia more confidence. You might consider reading him Carver’s New Smile, which is a children’s book we publish that shows how a little one with HED gets dentures. It will help him see that there are other kids like him. We also have a children’s book called, Lionel Learns What Matters Most. This teaches children that it’s what on on the inside of each of us that makes us special. We suggest that you go to school and read the Lionel book to the other children so they understand why your son’s teeth are shaped differently. We often find that kids don’t make fun when they understand what’s going on. You may want to call our NFED office at 618-566-2020 and talk to Kelley. She can help you with ideas on how to raise his confidence. You might also consider attending an NFED Family Conference where your son could play with other affected kids. Those can be really helpful too in helping him see he’s not alone. Good luck! You can do this. Call our office as we are here for you! ~ Jodi, NFED Communications Specialist

  3. 4
    Janet Johnson on November 16, 2023

    Thanks for sharing this, Lexie!
    Beautifully stated by a beautiful young lady, and so true that your condition does not define you. Keep smiling big!

  4. 5
    Israa Abuawad on December 1, 2023

    Great dear
    For me I fix my teath , now I have Hollywood smile
    But because that disease I don’t have hear just few like baby
    You didn’t share about hair, I think not affect, right
    Any body affect and treat the hair

    1. 6
      Kelley Atchison on December 6, 2023

      Hello, Israa. Yes, hair can be affected. We discuss related hair symptoms at https://nfed.org/learn/symptoms/hair-symptoms/.
      Please contact our office at info@nfed,org if you have any questions.
      Kelley, Director, Family and Community Programs

  5. 7
    Alexa on March 16, 2024

    Beautiful story, Lexie!! Thank you so much for sharing. It’s so inspiring to see how positive and confident you have become, and the pride you share about with HED.

  6. 8
    Kelle on March 17, 2024

    What part of Arizona are you in? My daughter is 13 and could use some guidance on heading into those teenage years with ED 😉

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