By Erica Merriweather

Sharing this story has had rewarding points and points where I wish I didn’t have to say anything to people who ask, or pretend they don’t want to know, “What happened to your teeth?” I usually start talking to people about my condition out of the blue because I’m afraid they’re going to make the first move and either make fun of me or have pity for me.

So here it goes.

How I Coped

When I was two years old, I cut my first tooth. Ironically, I found out later that I only had the capability to produce 19 to 21 teeth. My mom and dad didn’t see any significance in it, and it surely wasn’t shared with me as I grew up.

My parents weren’t able to get me braces, so they left it alone. In fact, I went through a lot of trials with being bullied in elementary school and high school because of my smile and its imperfect form. And there began my personal suffering and learning how to cover it up.

I turned inward and became reserved and quiet so I didn’t have to open my mouth. But, I also wanted to be known as someone who could stand out in other ways, no matter how passive-aggressive it seemed at the time.

To keep my smile from being the focus of everyone’s attention, I wore black every day as a symbol of depression for three years. I dressed like a teacher, wearing slacks, skirts, blazers, pumps and makeup that would cause people to inquire about my attire rather than focus on my teeth.

That’s hard to do for years on end. With all of that said, I’m relieved and yet, still troubled about the fact that I didn’t find out exactly what was wrong with my teeth until much later in life. 

Getting Answers as An Adult

In fact, I didn’t find out that I had ectodermal dysplasia until I was married close to 10 years at almost 30 years old. I’ll never forget it. My ex-husband was in the Marine Corps, and we were stationed in New York in the midst of doing our family physical exams.

Erica shows how ectodermal dysplasia has affected her teeth.

As I sat nervously in that dentist’s chair, I kept thinking of every time I was bullied as a child because of my double shark-tooth-shaped teeth, and I figured he’d be no different. He asked me questions about difficulty in brushing and flossing, and I told him that those were problems because of how my teeth were placed and spaced. I told him about how my gums hurt most of the time.

He then told me that I had a condition, but didn’t tell me what it was. This was weird. It wasn’t until I looked at my chart that I saw the words, ectodermal dysplasia.

Immediately, I thought it was something I did wrong. I was bewildered and asked him if there was anything that could be done about it.

Still Waiting for Oral Health Care

He said he would fix it for $14,000. What was depressing about it was the fact that even though our Tricare covered extractions and cleanings, it did not cover “cosmetic” reconstruction of my teeth. So we left it alone.

I am now 45 and wondering if I missed out on employment because of my smile. I have been divorced from my ex-husband for the past eight years and recently found out that he quite possibly married me to get base housing, so there may have been no love there for me at all. I’m now thinking that that had a lot to do with how I may have actually looked to him. And the price of getting cosmetic surgery has surged up to $47,000 for me now.

I am trying to remain positive, as I have daughters who also have ectodermal dysplasia and question their worth because of their smiles, which I’m sure is a mentality, I passed along to them. 

While at work, I lost one of my front teeth two weeks ago, I’m losing the last “fang” and a bottom front tooth. I’m worried about being seen but since I work in customer service as a cashier at Walmart I am not in a position to quit over it.

And yesterday I applied for Medicaid so that I could get dental and was turned away because I “make too much”. I’m sad today…but I have to keep on trucking.

Editor’s Note: Despite the challenges Erica has faced and continues to face, she’s finding strength in sharing her story. She is a vlogger on YouTube and recently started writing a book.

Erica Merriweather is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in Arizona with her two daughters, who are also affected by ectodermal dysplasia.

Share Your Story

8 comments on “Keep on Trucking”

  1. 1
    Kim Brumfield on September 10, 2019

    Thank you for sharing your story! You are beautiful even with missing teeth! Hopefully ELSA passes so you can get your teeth fixed! My children have this too! I have a very mild form of it.

  2. 2
    Debbie Reed on September 11, 2019

    Erica, you are Beautiful! There is only one thing I want to tell you, God does NOT make mistakes! I pray I get to hug you one day at a Family Conference! Stand tall and Smile! Teach your kids to do the same! 🙏🏻🌹❤️

  3. 3
    Rollanda McCoy on September 11, 2019

    Erica,
    Your story hit so close to home. I Grew up African American in the south, living with nearly no eyebrows and multiple missing teeth. As you described, this was no easy feat. Additionally, access to dental care in our home was never a priority, as maintaining bills and putting food on the table were the primary goals of my parents. Like you, I turned inward, battling low self esteem and lacking self-confidence. It was not until my son was diagnosed at 18 months old, that me and my family were able to “identify” the source of our unique family characteristics. I even took a mortgage out on my 1st home 15 years ago to get the much needed, $17,000 dental work done. Now 15 years later, the dental work is falling apart and in desperate need of repair, which I am told will be NOW be upwards of $42,000. I admire your courage to write and publish what so many of us don’t have the strength to discuss so publicly. Please know you are not alone and that your journey mirrors the journey of so many others.

  4. 4
    Susan Ulrich on September 11, 2019

    Do you live in a state that has the genetic anomaly law-in NY medical insurance would cover you teeth-I am here to help! You inspire me-go girl!!!Susan

    1. 5
      Jodi Edgar Reinhardt on September 12, 2019

      Here is a link to a document that shows all of the states that have statutes covering dental care for congenital anomalies. You can learn about the laws in your state! https://juyhw1n8m4a3a6yng24eww91-wpengine.netdna-ssl.com/wp-content/uploads/2019/09/Statutes-On-Congenital-Anomalies-By-State-9.10.2019.pdf ~ Jodi, NFED Director, Marketing and Communications

  5. 6
    Melissa on September 11, 2019

    I have 2 grandsons with this disorder, they have been teased as well. It hurts me because of me being with their grandad they developed it as well. Please continue to be sweet. Your definitely not alone.

  6. 7
    Kimberly on September 11, 2019

    I feel like I have the exact same life. I am missing so many teeth and the teeth I do have crumble if you look at them wrong. I was just told it would be over $15,000 to fix my smile. I have two autistic kids. I don’t have that kind of money. So I continue to hide in my house because every time I go out in public I get dirty comments like “meth mouth” and nasty looks from people. Even taking my kids trick or treating last year some lady told me I needed to immediately go see a dentist.

    1. 8
      Jodi Edgar Reinhardt on September 12, 2019

      Hi, Kimberly. We are so sorry to hear about the challenges you have had in getting dental care for your teeth. People are cruel in their comments and it’s not fair. We are working hard to get the Ensuring Lasting Smiles Act passed so that you can get insurance benefits for your dental care. Hang in there! If you ever want someone to talk to, please call our NFED office at 618-566-2020. ~ Jodi, Director, Marketing and Communications

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