Living with Infundibulopelvic stenosis-multicystic kidney syndrome
A rare genetic kidney condition with blocked or narrowed drainage areas that can lead to cysts and kidney problems.
Understanding Infundibulopelvic stenosis-multicystic kidney syndrome
The drainage system of the kidney (the pelvicalyceal system) is malformed to varying degrees, leading to a multicystic kidney. It often progresses to reduced kidney function. Imaging often shows swollen kidney drainage areas (calyceal dilatation and hydronephrosis).
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Belly, lower back, or flank pain
- Repeated urinary tract infections
- High blood pressure
- Protein in the urine
- Swollen kidney drainage areas (hydronephrosis)
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 says it is genetic and inherited in an autosomal dominant pattern, meaning one changed copy of the gene can be enough. It doesn't name a gene.
Also known as: infundibulopelvic dysgenesis; infundibulopelvic stenosis multicystic kidney syndrome
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 Infundibulopelvic stenosis-multicystic kidney syndrome.
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