By Soren Roe
A fun fact about myself (but really, not that fun) – I was born without 13 adult teeth. My mom recalls breaking down in the dentist’s office when she first heard this, which is the product of an undefined ectodermal dysplasia.
My sister shares this condition which was likely inherited from our father – while my twin brother luckily does not. As you can imagine, the toll has been immense both emotionally and financially for our family. For most of my life, I’ve resented having this ectodermal dysplasia and struggled to come to terms with my journey — a journey which I acknowledge is certainly a privileged one.
I’ve been beyond fortunate to receive world-class dental care and now, a great set of teeth. Even so, I feel the need to share my story not only for my own progress in this journey, but to provide company to those who also share these experiences.
Struggling to Cope With Missing Teeth
My lack of teeth is something that I struggled with for many years for both practical reasons and for my self-esteem. There were many ways I would try to hide this fact, such as smiling with my mouth closed (a habit I still carry to this day). I had trouble eating certain foods, and, most disappointingly, I was unable to bite into apples for years.
Even in baseball dugouts which were the place I felt the most comfortable as a kid, I would refrain from eating snacks no matter how hungry I was because I didn’t want my teammates to see me take my Invisalign (with my false teeth) out. These may seem minor to some, but it always made me feel that I was not like everyone else.
The most extreme example for me, was when I was 18 and just beginning to date my now girlfriend. Before our official first date, I vividly remember explaining to my mom that no matter how much she liked me, it wouldn’t matter once she realized my condition. To my surprise (but not my mom’s), when I took my retainer out at dinner that night, she didn’t care at all, and the rest of the date went very well.
Join Soren Roe and NFED Board President Karl Nelsen when they lead the ELSA Walk to the Capitol Building in Washington D.C. on Sunday, September 17. The event will kick off our NFED Advocacy Day on Capitol Hill on Tuesday, September 19. If you are not in the D.C. area, you can walk virtually, too. Soren and Karl will be livestreaming their walk on Facebook. Together, we can raise awareness for the Ensuring Lasting Smiles Act! Learn more.
Feeling Alone and Fearful
Thankfully, now it’s easy for me to recognize that these fears were overdone, but it goes to show how significant something like ectodermal dysplasia can be on ones’ self-perception. My lack of teeth was and still is a centrally defining part of myself and my personal experiences. This perception has made it difficult to contextualize my internal perception versus others’ perception of me.
Part of what has made this challenging is how isolating ectodermal dysplasia can be since, beyond my sister, I never knew anyone who had this condition. I’ve often thought about how many hours more than the average person I’ve spent at the dentists’ office over the years. I’ve thought about all the times I’ve laid in a reclinable chair with a glaring light just above my face, with my mouth stretched open far too wide; so much time that I’ve (frighteningly) come to memorize the different ceiling patterns of the offices where I’ve been a patient.
I also recognize the intense fear I have developed for the high-pitched whirl of one of the devices used to polish and shape my molded teeth, which every so often would shoot severe flashes of pain throughout my body. Or that particularly invasive feeling when the icy liquid of the IV would enter my veins before one of my many jaw surgeries.
Realizing My Resentment about Being Born Without Teeth
When I sum up all these experiences, I see how ectodermal dysplasia has shaped me. Until I started writing this, I didn’t realize how little I’ve truly appreciated this fact. Throughout my life, I’ve essentially compartmentalized these experiences as nothing more than a means to an end, and in doing so I created a sense of resentment over the fact that I’ve had to fight for a normal set of teeth when others haven’t. But is it a means to an end? I don’t think so – at least in terms of my teeth and experiences.
What I now truly understand is that this journey has formed who I am and how I look at the world, and for that I’m incredibly grateful.
No one should have to deal with ectodermal dysplasia, and no one should have to spend their formative years wishing that they could have normal teeth, skin, or hair. It is inherently unfair that something so uncontrollable can become such an obstacle to quality of life. But this unfairness is precisely why I’ve come to truly appreciate my condition – because it has empowered me to realize my strengths and truly assess what I am capable of. There are few things in my life that have impacted me in such a way, and I am undoubtedly better off because of it.
A New Opening Line
The very first line of this story is one that I’ve found myself using quite often when I meet new people now. I’ll mention that I was born without 13 teeth, and they’ll respond “What?! I would’ve never guessed!” I’ll explain that I have many implants and had a lot of other surgeries, and the person will usually struggle to identify which teeth are my natural ones and which ones are not.
It’s a fun way to share something personal about myself and will often encourage them to share something personal as well. People seem to genuinely appreciate hearing about my story and are often interested in learning about ectodermal dysplasia. It’s genuinely liberating to finally allow myself to become my own advocate – something that I hope to become for many others as well.
Soren Roe is a guest blogger for the National Foundation for Ectodermal Dysplasias. He lives in New York City and is affected by an unknown type of ectodermal dysplasia..