Living with Idiopathic camptocormia
A condition in which the upper body bends forward, often linked to muscle or nervous system problems.
Understanding Idiopathic camptocormia
It was once thought to be psychological, especially in wartime. It is now linked to muscle or nervous system disorders. Muscle disease (myopathy) of the back muscles seems to be the main cause. It usually starts in adulthood or older age.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Forward bending of the trunk
- Muscle changes in the back muscles (axial myopathy)
- Dystonia (muscle spasms)
- Degenerative joint disease (osteoarthritis)
- Changes in the spinal disks
- Brain changes seen on scans
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 brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- 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
Muscle disease (myopathy) seems to be the main cause, based on muscle tests, scans, and biopsy. Many other conditions can cause a secondary form.
Also known as: bent spine; bent spine syndrome; camptocormia; camptocormism; camptospasm; idiopathic camptocormism
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 camptocormia.
Explore research for Idiopathic camptocormia
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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