Living with Gingival fibromatosis-progressive deafness syndrome
A very rare syndrome, also called Jones syndrome, with overgrown gums and hearing loss that slowly worsens.
Understanding Gingival fibromatosis-progressive deafness syndrome
The gums grow too much (gingival fibromatosis), and hearing loss from the inner ear (sensorineural) gets worse over time. Extra gum growth can move teeth out of place, keep baby teeth in longer, and increase spacing. Only a few families have been reported. GARD lists onset in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Overgrown gums (gingival fibromatosis)
- Hearing loss that slowly worsens (sensorineural)
- Delayed tooth eruption
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 ear, nose, and throat 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
Hearing Loss Association of America and World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists)
- Expert care
- Expert lists: Hearing Loss Association of America, World Craniofacial 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 Hearing Loss Association of America 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
It is inherited in an autosomal dominant way, which means one changed copy of a gene can be enough. GARD says the genetic cause is not yet known.
Also known as: gingival fibromatosis with progressive deafness; gingival fibromatosis with progressive deafness syndrome; gingival fibromatosis with sensorineural hearing loss; gingival fibromatosis-progressive hearing loss syndrome; jones syndrome
Patient organizations
- Hearing Loss Association of AmericaGingival fibromatosis-progressive deafness syndrome · United States
- World Craniofacial FoundationGingival fibromatosis-progressive deafness syndrome · United States
- Children's Craniofacial AssociationGingival fibromatosis-progressive deafness syndrome · United States
- FACES: The National Craniofacial AssociationGingival fibromatosis-progressive deafness syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Gingival fibromatosis-progressive deafness syndrome.
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