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.
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.
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.
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.
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