Living with Fibromatosis, gingival, 1
A rare condition in which the gums slowly grow larger, often running in families.
Understanding Fibromatosis, gingival, 1
The gum enlargement is benign (noncancerous), slowly progressive, and does not bleed. It affects the gums of both the upper and lower jaw. Other types of hereditary gingival fibromatosis have been linked to other places in the genome.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Slowly enlarging gums
- Gum enlargement on upper and lower jaws
- Non-bleeding gum overgrowth
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
RASopathies Network may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: RASopathies Network
- 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 RASopathies Network
- 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 doesn't describe the cause for this specific type yet. Other types have been linked to other genes, including REST for type 5.
Also known as: fibromatosis, gingival, type 1; gingf1; gingival fibromatosis caused by mutation in sos1; hereditary gingival fibromatosis caused by mutation in sos1; sos1 gingival fibromatosis; sos1 hereditary gingival fibromatosis
Patient organizations
- RASopathies NetworkFibromatosis, gingival, 1 · United States
You are more than your diagnosis
Perspectives from people navigating life with Fibromatosis, gingival, 1.
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