I wanted to share my journey with periodontal Ehlers-Danlos syndrome (pEDS) in hopes to help others and spread awareness around this rare type of EDS!
My very first extractions happened when I was 2 years old. Since childhood, my baby teeth were so weak despite my parents efforts and fears (as early toothloss runs on my dad’s side); my baby teeth would break over anything. This followed with a plethora of digestive issues and joint issues starting very young.
By 12, I had been diagnosed with Temporomandibular disorder (TMD) and an underdeveloped jaw joint on the left side. At this point, the majority of my baby teeth had been removed by the dentist due to them having severe cavities and decay. This was despite daily brushing and flossing.
From ages 13-16, I was having development issues; from leg length discrepancy causing severe nerve issues, to my septum coming in so crooked I needed a septoplasty at 16.
By 17, my jaw joint fully broke and I needed an emergency surgery. With dislocations and digestive issues still happening; I had no clear diagnosis as to what was happening.
By 18, I was in a minor car accident and was prescribed naproxen, which gave me stomach ulcers. Very ill with ulcers, I was vomitting daily for months and brushing directly after; not knowing I was destroying the enamel on my weak adult teeth. Having no enamel left, my adult teeth started to become paper thin and break over everything.
By 19, I had to get my first denture. My adult teeth had become so brittle and broken, they had also started to come loose from my gums. Dentists and doctors figured this was from brushing after vomitting, until the other health issues started to surface even more into my early twenties.
In 2021, I had to have organs removed due to prolapsing, had neuropathy pain, and joints that wouldn’t stop shaking. No doctor knew what was going on and didn’t think it was connected to my toothloss. That was until a prosthodontist halted all my dental work ( I had all my upper teeth removed which made the chronic pain worse everywhere, I was 22 now stuck without any teeth) as she thought something was underlying.
It wasn’t until June 2023 when a doctor from The Ehlers-Danlos Society heard my story in the news pleading for medical help as I couldn’t get teeth until I got medical clearance. She suspected I had a form of EDS. With hypermobility being present, she feared it wasn’t just that and sent me for genetic testing in August 2023.
On March 12, 2024 I met with the geneticists who confirmed I have a rare type of Ehlers-Danlos syndrome, called periodontal Ehlers-Danlos syndrome. Because of its rarity, there’s not many studies done on this type of EDS, therefore I began the process of preemptive testing; scans of my heart, head, etc.
As I’m writing this, it’s now October 2024. I have a full set of dentures! The diagnosis of EDS gave me enough clearance to get teeth. I currently have four restored lower teeth left, but just found out they’re coming very loose.
Having this condition is scary as my future children run a 50% chance of inheriting this, and going into old age, I’m unsure what my health will face. But this condition has not only made me stronger, but has made me appreciate the smallest things in life.
Losing my teeth so young, I faced a lot of hate due to the stigma around bad teeth. I started to share my story online in hopes to break the stigma that surrounds bad or no teeth, and bring light to this form of EDS. Life is too short to hide your smile, regardless of teeth.
