By Tova Fuller,  M.D., Ph.D.

I was three or four years old when my mother was distressed my teeth just weren’t coming is as they should have. A dentist diagnosed me with ectodermal dysplasia, and within time, it became clear that I could not sweat as well as other kids. I’d run around the yard with my next door neighbor until I became beet red and overheat in the Indiana summers.

Tova as a young girl affected by ectodermal dysplasia.

I myself did not notice I had bald spots until I was maybe six or seven and attempted to wear my hair in pigtails like the other girls. I was subjected to bullying. It didn’t help that my dentist photographed me with my mouth open wide and gaps aplenty shown for “before” pictures. A classmate saw this and it became widespread knowledge in my small town.

The “before” pictures were for caps and bridges that this pediatric dentist had never done before. His attempt could pretty clearly be called dental malpractice, and since, I’ve had the dental work redone and one implant placed. Had I had the resources and knowledgeable dentists when I was younger, I might have been able to have more implants before the bone resorbed.

Didn’t Stop Me

Nonetheless, I did not let this keep me from being engaged and active. In second grade I started dance classes, and never let the decreased sweating keep me from it. I was Miss Teen Dance of Chicago in high school. Fast forward several years later, and I have three graduate degrees, including a Ph.D. in human genetics and an M.D., in addition to being trained in 1.5 specialties. (I am completing my second and final residency currently).

In my first genetics class, I remember opening the book to find an explanation of how women (XX) are mosaics when it comes to X-linked disorders; the example given was ectodermal dysplasia. This made sense to me: as a woman I still retain some ability to sweat, some teeth, and some hair. Nonetheless, I find myself explaining to physician colleagues what my disorder is. It still is not taught regularly in medical schools. I have met no other individuals with the disorder to date.

Road Trip

What I would want to say to the parents of children affected by ectodermal dysplasias is that specialist care is worth taking going a trip to the big city early on. Do not let someone unacquainted with the disorder promise dental care they will not provide well.

To the children who have the ability to connect on the internet here, the support of others with the disorder is a huge resource not given to me.

And to both, do not let this affect your dreams. I have always thought of my disorder as lending me a kind of empathy for others that others without disabilities did not have.

I may not be able to do MSF (Docs Without Borders) given the near equatorial climates conflicts often appear in. However, I have achieved far more than any one of those silly kindergarten bullies, let alone anyone in my family unaffected.

One comment on “My Disorder Didn’t Affect My Dreams”

  1. 1
    Amanda Christenson on April 12, 2017

    I just want to say thank you. I remember being bullied in school. I have never met a Dr who knew much about ectodermal displaysia, what it is, or how to treat it. I have had physicians tell me my fingernails are nothing more than a fungal infection. The only other people I’ve even met with ED are my family members, and even they have never known much about it. NFED has made me not feel so alone in this world. Thanks for sharing your story.

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