Conditions
Periodontal Ehlers-Danlos syndrome (pEDS)
Gum disease and tooth loss that start early, often with easy bruising and brown or purple patches on the shins.
About Periodontal EDS
Periodontal Ehlers-Danlos syndrome (pEDS) is a rare condition that runs in families. It mainly affects the gums and the tissue that holds teeth in place. A parent with pEDS can pass it to a child.
Gum disease often starts in childhood or the teen years. Teeth can become loose or fall out early, even with good brushing. The gums may be thin and fragile and pull back from the teeth. Many people also bruise easily and have brown or purple patches on the front of the shins.
A clinical geneticist usually makes the diagnosis, often working with a dentist or gum specialist. A genetic test looks at two genes, C1R and C1S. Gum exams and dental x-rays are part of care.
Before a visit, it helps to record when gum problems and tooth loss started, and to save dental reports. Bruising, infections, photos of shin patches, and relatives with early tooth loss are useful too.
Who usually evaluates it: Usually a clinical geneticist, often working with a dentist or gum specialist (periodontist).
What you can record in Selihc Health
- Gum disease and teeth that got loose or fell out, and when it started
- Gums that bleed easily, bruising, frequent infections, and hernias
- Your own check of shin patches, receding gums, skin stretch and how far your joints bend, labeled as self-reported
- Photos of your gums, shins, skin and bruises
- Dental, gum and genetic test reports, with the findings and genes they name
- Relatives with similar problems or a diagnosis
What only a clinician can do
- A gum and dental exam, including dental x-rays
- Examining the skin, shins, face and joints
- Deciding on genetic testing and explaining the result
In an emergency
Call 911 right away for a sudden, very bad headache, sudden weakness or numbness on one side, or trouble speaking. Also call 911 for sudden, severe pain in the chest, back or belly, or for sudden trouble breathing. Do not drive yourself.
The published criteria
Your summary organizes your records against these sources, for your clinician to review. What clinicians see
Periodontal Ehlers-Danlos syndrome: 2017 international classification
Malfait F, Francomano C, Byers P, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175(1):8-26. doi:10.1002/ajmg.c.31552
Draft, awaiting clinical reviewVersion 1Read the source(opens in a new tab)
This page is general information written for patients, not medical advice. Content is a draft awaiting clinical review.
Start organizing your evidence today.
Free for patients.