By Karl Nelsen

My name is Karl Nelsen. I was born in rural Minnesota and wasn’t diagnosed with ectodermal dysplasia until the age of 5 when my dental challenges became obvious.

I have only a few baby teeth and even fewer adult teeth. I received my first set of dentures when I was 5 and they quickly became an amazing tool for “shock value” during my grade school years!

As I grew, I needed larger dentures and my parents struggled to get them covered by our medical insurance, despite numerous appeals as the dental needs were a result of my medical condition.

My 20s

During my 20s, my teeth deteriorated and were not viable to support another denture. I had to make a hard decision and I was advised to pursue dental implants at the University of Minnesota. This was a great decision and the right treatment plan for me.

The implants and associated prostheses were both an improvement in function as well as appearance.  However, it came with a significant price which I had to pay out of pocket as my medical insurance wouldn’t cover it.  Ten implants, a fixed removal denture on the bottom and a removal denture on the top cost me well over $30,000 in 2000. It was a hard decision but it was the right decision.

My 40s

In my mid-40s, a couple of the implants in my mandible failed. Bone grafting was needed to build up the site for restoration again. They were able to shave off the top margin of the back of my mandible(ramus) to harvest enough material to fill in the defect. It took several months before the bone was ready for a new implant to be placed.

I have been advised to replace the implants in the maxilla also in the near future. During this phase, I’ll need bone graft material to be placed in my sinus cavities to help anchor the replacement implants since my bone density is abnormal, like many people with ectodermal dysplasia. As you can imagine, I’m not looking forward to this step.

Karl Nelse and his family shared their story at the NFED Advocacy Day in 2018.
My family joined me on Capitol Hill in 2018 to fight for the Ensuring Lasting Smiles Act.


My medical insurance does not cover any of the implants or the new dentures that I’ll need for my oral restoration even though I work hard and pay my premiums. Please support the Ensuring Lasting Smiles Act so medical insurance companies clearly understand that teeth are not cosmetic and that restorations of congenital anomalies, including dental changes, should be included in their medical plans.

Let’s get this right so my daughter doesn’t have to be fighting for every single tooth. Let’s get this right so your daughter, your son, your granddaughter, or your grandson doesn’t have to read denial letters over and over again.

Will you advocate for me? Attend Advocacy Day on the Hill 

One comment on “Hard But Right Decision”

  1. 1
    Bobbi Johnson on April 26, 2019

    Absolutely, this should be covered by medical insurance. If a woman has breast cancer, insurance is required to cover reconstruction of not just the breast that has cancer, but the other breast, for the sake symmetry. Breast reconstruction surgery is cosmetic, but the law requires that it be covered because the deformity is caused by a medical problem. The jaw and the teeth are not cosmetic. This is a problem brought on by a medical issue, and is medically necessary for day to day function. It is not cosmetic. This is similar to not covering hearing aids. How is hearing loss not a medical issue? Teeth and hearing are necessary for day to day, proper function. Breast implants serve no purpose other than cosmetics. They are not required for the human body to function properly. The jaw and teeth, as well as hearing, should always be covered by medical insurance, especially for problems brought on by medical issues.

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