My 30 year journey to a pEDS diagnosis

Posted August 23, 2019

I have periodontal Ehlers-Danlos syndrome (pEDS). It took 30 years to get that diagnosis.

I had good dental care growing up, but had early-onset periodontal disease with bleeding and receding gum tissue. At 24, I lost a lower front tooth. Despite attempts to surgically repair the surrounding tissue to try to save the tooth, my gums were too fragile and would not heal. I tried to hide that gap, but soon I had a baby and reason to smile.

As a toddler, my daughter didn’t crawl on her knees much, she preferred to scoot on her butt. After she had been walking for about a year she suddenly stopped, but couldn’t tell us why. The doctor found nothing wrong, calling it “growing pains.” She had many digestive issues, allergies and very fair, fragile skin that flushed, burned and bruised easily. Just like mom’s.

At 13, her migraines began and so did the many different doctor visits and medications. Finally at age 24, she saw a geneticist who put all the puzzle pieces together to reach her EDS diagnosis. The geneticist suggested I be tested also, and thus my pEDS diagnoses, for which there is a genetic marker.

I work hard to afford good health and dental insurance, so have had a wonderful, gentle, dental hygienist and dentist for the past 23 years. I lost 3 more teeth, but have a strong new bridge and I’m free to smile now.

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