Living with Fingerprint body myopathy
A rare muscle condition present from birth with low muscle tone and weakness; fewer than 20 people have been described.
Understanding Fingerprint body myopathy
Under the microscope, the muscle fibers show many "fingerprint bodies" at their edges. Fewer than 20 people have been described. A few cases have appeared on their own, and some have a recessive pattern.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Low muscle tone from birth (hypotonia)
- Muscle weakness
- Fingerprint bodies seen in muscle samples
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 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
- Brain and nervous system specialists (neurologists); 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
Changes in genes cause it. GARD lists X-linked inheritance, but also notes some sporadic cases and cases of recessive transmission.
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 Fingerprint body myopathy.
Explore research for Fingerprint body myopathy
Explore actively recruiting Fingerprint body myopathy studies with HealthSpark.
Find actively recruiting studies for Fingerprint body myopathy 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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