Living with Ehlers-Danlos syndrome, periodontitis type
A rare inherited type of Ehlers-Danlos syndrome with severe gum disease starting in childhood, easy bruising, and stretchy fragile skin.
Understanding Ehlers-Danlos syndrome, periodontitis type
Main features are severe periodontitis (gum disease) that is hard to treat, a lack of firm gum tissue (attached gingiva), and raised plaques on the shins. People may also bruise easily, have very flexible fingers and toes, stretchy and fragile skin, abnormal scars, and repeated infections. It begins in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Severe gum disease (periodontitis)
- Early tooth loss and missing adult teeth
- Very flexible joints
- Stretchy, fragile skin
- Sunken scars
- Short height
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists, bone and joint specialists, genetic specialists and gum, teeth and mouth specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Ehlers-Danlos Society and Bobby Jones Chiari & Syringomyelia Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists)
- Expert care
- Expert lists: Ehlers-Danlos Society, Bobby Jones Chiari & Syringomyelia Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Ehlers-Danlos Society and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in a person's genes cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: eds viii; ehlers-danlos syndrome type 8; ehlers-danlos syndrome type viii; ehlers-danlos syndrome, periodontosis type; ehlers-danlos syndrome, type 8; peds
Patient organizations
- Ehlers-Danlos SocietyEhlers-Danlos syndrome, periodontitis type · United States
- Bobby Jones Chiari & Syringomyelia FoundationEhlers-Danlos syndrome, periodontitis type · United States
- EDS AwarenessEhlers-Danlos syndrome, periodontitis type · United States
- The Zebra NetworkEhlers-Danlos syndrome, periodontitis type · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ehlers-Danlos syndrome, periodontitis type.
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