Living with Idiopathic juvenile osteoporosis
A bone condition that begins in childhood, with thin, brittle bones that break easily.
Understanding Idiopathic juvenile osteoporosis
Bones have too little calcium and other minerals, so they are brittle and prone to breaks. Fractures often happen in the long bones of the arms and legs and in the bones of the spine. Multiple fractures can cause bone pain and movement problems.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Thin, brittle bones (osteoporosis)
- Repeated fractures
- Bone pain
- Collapsed bones in the spine (vertebral compression fractures)
- Changes in the way a person walks
- Hunched back (less common)
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 autoimmune and inflammatory disease specialists, 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
- autoimmune and inflammatory disease specialists (rheumatologists); 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
GARD says changes in genes cause this condition. It doesn't list a specific gene or inheritance pattern.
Also known as: idiopathic osteoporosis; ijo; juvenile osteoporosis; paediatric osteoporosis; pediatric osteoporosis
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 Idiopathic juvenile osteoporosis.
Explore research for Idiopathic juvenile osteoporosis
Explore actively recruiting Idiopathic juvenile osteoporosis studies with HealthSpark.
Find actively recruiting studies for Idiopathic juvenile osteoporosis 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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