Living with Dentin dysplasia-sclerotic bones syndrome
A very rare inherited condition with tooth dentin differences and dense, hardened long bones.
Understanding Dentin dysplasia-sclerotic bones syndrome
It combines dentin dysplasia in the teeth with hardening of all the long bones (osteosclerosis), thick outer bone, and narrowed or blocked marrow spaces. GARD notes no further descriptions in the medical literature since 1977, and lists onset in infancy.
Signs & symptoms
GARD doesn't list a symptom list. Its summary describes these features:
- Dentin dysplasia in the teeth
- Hardened, dense long bones (osteosclerosis)
- Heavy outer bone layer
- Narrowed or blocked marrow spaces
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 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.
Care & treatment
- Care team
- Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists)
- 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
GARD doesn't name a gene. It lists autosomal dominant inheritance, so a changed copy of the gene from one parent can be enough.
Also known as: sclerotic bones with dentin dysplasia
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 Dentin dysplasia-sclerotic bones syndrome.
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