Living with Gigantiform cementoma
A rare genetic bone disease with painless, slowly growing jaw lumps that can change the shape of the face.
Understanding Gigantiform cementoma
The growths are painless and noncancerous and expand slowly over time. They can cause severe changes to the face. It usually shows up at an early age and often occurs along with long bone differences and fractures. Incomplete surgical removal may lead to faster growth of the part that remains.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes these features:
- Painless growths in the jaws
- Jaw growths that expand over time
- Facial changes in shape
- Long bone differences
- Bone fractures
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 bone and joint specialists, cancer specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Cancer specialists (oncologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
Changes in genes cause this condition. It is inherited in an autosomal dominant way, which means one changed copy of a gene can be enough. GARD does not name the gene.
Also known as: cemental dysplasia, periapical; cementomas, familial multiple; familial multiple cementoma; familial ossifying fibroma; gigantiform cementoma, familial; hereditary ossifying fibroma (disease)
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Gigantiform cementoma.
Explore research for Gigantiform cementoma
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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