Living with Diffuse idiopathic skeletal hyperostosis
A rare condition affecting the spine, where ligaments along the spine harden, sometimes with mild back pain.
Understanding Diffuse idiopathic skeletal hyperostosis
Ligaments alongside the spine harden (ossify), most in the lower chest area. Other features include bone spurs and thick skin on the palms and soles. People may have no symptoms or mild to moderate back pain. GARD lists onset in adulthood and notes no further descriptions in the medical literature since 1969.
Signs & symptoms
Symptoms vary. GARD lists these among the most common:
- Spine differences
- Mild to moderate back pain
- Degenerative joint disease (osteoarthritis)
- Thickened palms and soles
- Differences in the pelvis bone
- Obesity
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.
- 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); 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 Arthritis Foundation
- 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 says changes in genes cause this condition. It is autosomal dominant, so a changed copy of the gene from one parent can be enough.
Also known as: ankylosing hyperostosis; ankylosing vertebral hyperostosis; ankylosing vertebral hyperostosis with tylosis; dish; dish - diffuse idiopathic skeletal hyperostosis; disseminated idiopathic skeletal hyperostosis
Patient organizations
- Arthritis FoundationDiffuse idiopathic skeletal hyperostosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Diffuse idiopathic skeletal hyperostosis.
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