Why I Created This Blog
For more than two decades, I struggled with a challenging constellation of symptoms and spent those years either undiagnosed, misdiagnosed, or repeatedly underdiagnosed. Among my many symptoms, I had severe fatigue, pain, gastrointestinal symptoms, cardiovascular issues, and neurological strangeness. I had many laboratory abnormalities but nothing with much specificity. Essentially, doctors didn't know why any of this was happening. The most common response was that it wasn't or that my mother was making me sick, and once I was old enough, it was I who was making me sick.
I had always had gingivitis, sensitive teeth, and gums. As I lost my baby teeth, some of my adult teeth came in already having cavities. Each time I went to the dentist was torture. I was in horrible pain as I do not respond to lidocaine. With each new filling, more would follow. During my teen years, the fillings would frequently fail. They would crumble and fall out. Each dentist I saw blamed it on my dental hygiene, my diet, or the previous dentist's shoddy work. No matter how much I tried to improve my habits or follow their advice, the pattern never changed—fillings crumbled, pain persisted, and no one could explain why.
It wasn't until the last dentist saw his own work fail that it became apparent that no amount of dental hygiene, lifestyle modifications, or restorations were going to save me from continued pain and, likely, periodontitis with bone loss. Once bone loss occurs, it can not be reversed. Any amount of bone loss would have compromised my ability to have implant-supported dentures.
I was 22 years old when I had all of my teeth removed and 12 implants placed into my jawbone. It would be another 10 years (this year) before I would understand why this happened to me.
In the end, it was a serendipitous search of a database of rare diseases focusing on ones related to tooth loss that I came across pEDS. I realized that diagnostic criteria for EDS had been redefined in 2017, with many more types defined, and that it had never been ruled out. I began to make my case first to my primary care and cardiologist that I needed to be properly evaluated for EDS, then to the rheumatologist. The geneticist immediately identified that I had EDS and ordered genetic testing to identify if it was a genetically identifiable form or if it was hEDS, which has not had its genetic cause(s) identified.
Even a diagnosis doesn't end the struggle. I now encounter a new frustration. Given how rare pEDS is, most doctors don’t know anything about it, even if they are familiar with Ehlers-Danlos more broadly, and that is quite a large IF. Many assume that periodontal EDS means that the disease is confined to the realm of dentistry and question the diagnosis entirely when I am not flexible in the way they expect.
I named this blog Not Just Teeth because my experience with pEDS has shown me how frustratingly limited medical perspectives can be. Specialists focus on their niche without looking at the broader implications, leaving patients to piece together their own understanding of how their symptoms connect. I’ve had to fight to be taken seriously, to explain that my symptoms aren’t isolated problems but part of a larger systemic condition.
This blog is my way of breaking that cycle—of documenting my experiences, sharing what I’ve learned, and connecting with others who know what it’s like to fall through the cracks of a fragmented healthcare system. My goal is to shed light on the broader impacts of pEDS and remind others that they aren’t alone in navigating this challenging journey.
