Overview
Periodontal Ehlers-Danlos syndrome (pEDS), also known as EDS type VIII or periodontitis-type EDS, is a rare inherited connective tissue disorder. Connective tissue is the body's structural 'glue' that holds skin, joints, blood vessels, and other tissues together. In pEDS, a genetic change causes this tissue to be weaker than normal, leading to a unique combination of problems affecting the gums, skin, and joints. The most striking feature of pEDS is severe gum (periodontal) disease that starts in childhood or early adulthood. This gum disease is much worse than typical gum disease and leads to early tooth loss, often before age 30. The skin in pEDS tends to bruise very easily, may look thin or slightly see-through, and can have a pretibial (shin area) discoloration or scarring. Joints may be mildly loose or hypermobile, and wounds may heal with unusual scars. There is currently no cure for pEDS. Treatment focuses on managing symptoms, especially through intensive dental and gum care to slow tooth loss, protecting the skin from injury, and monitoring joint health. A team of specialists including dentists, periodontists, and geneticists is usually needed. Early diagnosis is very important because aggressive dental care from a young age can help preserve teeth longer and improve quality of life.
Also known as:
Key symptoms:
Severe gum disease starting in childhood or teenage yearsEarly tooth loss, often before age 30Skin that bruises very easilyThin or slightly see-through skinBrownish or reddish skin discoloration on the shins (pretibial area)Unusual or wide scars after skin injuriesMildly loose or flexible jointsFragile gum tissue that bleeds easilyReceding gumsSlow or poor wound healing
Clinical phenotype terms (12)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Childhood
Begins in childhood, roughly ages 1 to 12
FDA & Trial Timeline
10 eventsMassachusetts General Hospital — NA
Hospital for Special Surgery, New York — PHASE4
Eli Lilly and Company — PHASE3
Wake Forest University Health Sciences
Uskudar University — NA
University of Mississippi Medical Center — NA
Ann & Robert H Lurie Children's Hospital of Chicago — NA
Pfizer — PHASE3
Phoenix Children's Hospital — PHASE4
Duke University — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Periodontal Ehlers-Danlos syndrome.
5 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Treatment Centers
8 centersNational Institutes of Health Clinical Center
📍 Bethesda, Maryland
👤 Payal P Khincha, M.D.
👤 Christopher Grunseich, M.D.
Stanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🏥 NORDBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
Travel Grants
No travel grants are currently matched to Periodontal Ehlers-Danlos syndrome.
Community
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Start the conversation →Latest news about Periodontal Ehlers-Danlos syndrome
Disease timeline:
New recruiting trial: EPIC-Peds: A Study to Learn About the Study Medicine Called PF-07321332 (Nirmatrelvir)/Ritonavir in Patients Under 18 Years of Age With COVID-19 That Are Not Hospitalized But Are at Risk for Severe Disease
A new clinical trial is recruiting patients for Periodontal Ehlers-Danlos syndrome
New recruiting trial: Continuous vs Intermittent Ketorolac for Pain Control in Peds CV Surgery
A new clinical trial is recruiting patients for Periodontal Ehlers-Danlos syndrome
New recruiting trial: A Study of Dulaglutide (LY2189265) 3.0 mg and 4.5 mg in Pediatric Participants With Type 2 Diabetes Mellitus (AWARD-PEDS PLUS)
A new clinical trial is recruiting patients for Periodontal Ehlers-Danlos syndrome
New recruiting trial: Distal Radius Interventions for Fracture Treatment
A new clinical trial is recruiting patients for Periodontal Ehlers-Danlos syndrome
New recruiting trial: Low Systemic/High Local Exercise Load in Peds SCD
A new clinical trial is recruiting patients for Periodontal Ehlers-Danlos syndrome
New recruiting trial: Anterior Femoral and Adductor Canal Nerve Blocks in Peds Knees
A new clinical trial is recruiting patients for Periodontal Ehlers-Danlos syndrome
New recruiting trial: Streamlined Treatment of Pulmonary Exacerbations in Pediatrics
A new clinical trial is recruiting patients for Periodontal Ehlers-Danlos syndrome
New recruiting trial: Cranial Ultrasound for Point of Care Intracranial Pathology Detection in Pediatrics
A new clinical trial is recruiting patients for Periodontal Ehlers-Danlos syndrome
New recruiting trial: A Study of Facilitators and Barriers to Improve Acute Kidney Injury in Children Through Mobile Health Intervention
A new clinical trial is recruiting patients for Periodontal Ehlers-Danlos syndrome
New trial: Oral Bacteria and Immune System Problems Involved in Gum Disease (Periodontitis)
Phase NA trial recruiting.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which genes should be tested to confirm my diagnosis, and how long will results take?,How often should I see a periodontist, and what type of gum treatments are most important for me?,Are there any specific dental products or routines you recommend to help protect my teeth?,What signs should prompt me to seek urgent dental or medical care?,Should my children or other family members be tested for this condition?,Are there any clinical trials or research studies I could participate in?,What other specialists should be part of my care team?
Common questions about Periodontal Ehlers-Danlos syndrome
What is Periodontal Ehlers-Danlos syndrome?
Periodontal Ehlers-Danlos syndrome (pEDS), also known as EDS type VIII or periodontitis-type EDS, is a rare inherited connective tissue disorder. Connective tissue is the body's structural 'glue' that holds skin, joints, blood vessels, and other tissues together. In pEDS, a genetic change causes this tissue to be weaker than normal, leading to a unique combination of problems affecting the gums, skin, and joints. The most striking feature of pEDS is severe gum (periodontal) disease that starts in childhood or early adulthood. This gum disease is much worse than typical gum disease and leads t
How is Periodontal Ehlers-Danlos syndrome inherited?
Periodontal Ehlers-Danlos syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Periodontal Ehlers-Danlos syndrome typically begin?
Typical onset of Periodontal Ehlers-Danlos syndrome is childhood. Age of onset can vary across affected individuals.
Are there clinical trials for Periodontal Ehlers-Danlos syndrome?
Yes — 5 recruiting clinical trials are currently listed for Periodontal Ehlers-Danlos syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Periodontal Ehlers-Danlos syndrome?
16 specialists and care centers treating Periodontal Ehlers-Danlos syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.