Living with Acropectororenal dysplasia
A very rare condition with a missing or small chest muscle, hand differences on one side, and urinary or genital differences.
Understanding Acropectororenal dysplasia
Poland anomaly means a missing or small pectoralis major (chest) muscle on one side. It comes with hand differences on the same side, such as short or webbed fingers, an absent thumb, or small fingers. Genital and urinary differences include small or missing kidneys, a blocked kidney outlet, hypospadias, and undescended testes.
Signs & symptoms
GARD doesn't list a symptom list for this condition yet. The summary describes these features:
- Missing or small chest muscle on one side
- Short or webbed fingers
- Absent thumb
- Small or missing kidney
- Hypospadias
- Undescended testes
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 doesn't describe a cause for this condition yet.
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 Acropectororenal dysplasia.
Explore research for Acropectororenal dysplasia
Explore actively recruiting Acropectororenal dysplasia studies with HealthSpark.
Find actively recruiting studies for Acropectororenal dysplasia 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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