Living with Worth disease
A bone condition in which bones become denser, mostly in the skull and long bones, without a higher risk of fracture.
Understanding Worth disease
GARD says it is not linked to a higher risk of fracture. It usually shows in the teen years. Features include excess bone growth in the skull and face, and a bony bump on the roof of the mouth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Denser bones throughout the body
- Extra bone growth in the skull and face
- Denser collarbones
- Denser spine bones
- Bony bump on the roof of the mouth (torus palatinus)
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 and genetic specialists.
- 3Consider genetic testing
Changes in LRP5 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); 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
Worth disease is caused by changes in the LRP5 gene. A child can get it from one parent with the changed gene (autosomal dominant).
Also known as: autosomal dominant endosteal hyperostosis; autosomal dominant osteosclerosis; autosomal dominant osteosclerosis, worth type; benign form of worth hyperostosis corticalis generalisata with torus platinus; endosteal hyperostosis, autosomal dominant; endosteal hyperostosis, worth type
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 Worth disease.
Explore research for Worth disease
Explore actively recruiting Worth disease studies with HealthSpark.
Find actively recruiting studies for Worth disease with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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