Not Just Teeth
My Endless Journey of
Living with an Ultra-Rare Disease
What you’ll find on Not Just Teeth
This blog is a personal account of my experiences living with periodontal Ehlers-Danlos Syndrome (pEDS) and its many comorbidities. While every person’s journey with chronic illness is unique, I hope that sharing my own can offer insight, validation, or even just the knowledge that you’re not alone.
On Not Just Teeth, you’ll find:
Personal experiences navigating life with pEDS, from diagnosis struggles to daily management.
Discussions on symptoms and comorbidities, especially the lesser-known or misunderstood aspects of connective tissue disorders.
Reflections on medical self-advocacy, from advocating for proper care to dealing with medical gaslighting and clinician-associated trauma.
Honest takes on treatments, management strategies, and what has (or hasn’t) worked for me.
A realistic perspective on living with rare and chronic conditions — the good, the bad, and the frustrating.
This isn’t a medical advice blog—just my firsthand account of what it’s like to live with pEDS and the complicated web of conditions that come with it. If my experiences help even one person feel seen, then sharing them is worth it.
What is periodontal Ehlers-Danlos Syndrome?
Periodontal Ehlers-Danlos syndrome (pEDS) is a genetic connective tissue disorder that is defined by severe, early-onset periodontitis, leading to the premature loss of teeth due to thin, fragile gums and lack of attached gingiva.
Like all forms of Ehlers-Danlos Syndrome, it affects connective tissues throughout the body, causing significant systemic complications. Individuals with pEDS experience extreme gum fragility, widespread tissue fragility, easy bruising, joint hypermobility, and characteristic shin discoloration. Despite its profound impact, pEDS is often misunderstood due to its name. It is a multi-system disorder that affects far more than the teeth.
It is also essential to recognize that, like other forms of EDS, symptoms and severity will vary significantly between patients, even within the same family.
With an estimated prevalence of fewer than 1 in 1 million, periodontal Ehlers-Danlos syndrome (pEDS) is one of the rarest forms of EDS. It is caused by gain-of-function mutations in the C1R and C1S genes, which affect the complement cascade and connective tissue integrity.
For more information about periodontal Ehlers-Danlos and other Ehlers-Danlos Syndromes, please visit The Ehlers-Danlos Society website.
Who Am I?
I have spent the past 26 years on a diagnostic odyssey. I am 32 years old and have spent most of my life managing multiple chronic illnesses.
I have pEDS, periodontal Ehlers-Danlos (formerly Ehlers-Danlos Type VIII), an extremely rare genetic connective tissue disease. In addition to pEDS, I have many comorbidities, which are common for anyone with connective tissue disease.
My current diagnoses include Mitochondrial dysfunction (Carnitine deficiency and Complex I deficiency), Autonomic Dysfunction/POTS, Migraines, Hashimoto’s Thyroiditis, ADHD/ASD, Selective IgM Deficiency, De Quervain Syndrome, Spina Bifida Occulta (S1), Iron Deficiency/Anemia.
I write under the name Cait to maintain my privacy. My journey with pEDS is deeply personal, but I also know I’m not alone, and feel compelled to share my journey.
Not Just Teeth is a personal project — my first blog and first website. I’m learning as I go, so things Will change and (hopefully) improve over time.
Disclaimer: The Ehlers-Danlos Society logo is used here for informational purposes only. Not Just Teeth is not affiliated with or endorsed by the Ehlers-Danlos Society. For official information, please visit The Ehlers-Danlos Society website.