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