Living with Multicystic kidney dysplasia
A condition present from birth in which one or both kidneys are large, filled with cysts, and do not work.
Understanding Multicystic kidney dysplasia
It can affect one kidney (unilateral) or both (bilateral). When only one kidney is affected, there are usually no symptoms as long as the other kidney works fully. Sometimes the cysts grow large enough to cause belly symptoms. Bilateral disease is more serious and can cause low amniotic fluid, underdeveloped lungs, and severe kidney failure in newborns. Signs are seen in the newborn period or infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Large kidney filled with cysts
- A mass in the belly
- Belly swelling
- Breathing difficulty in newborns
- Early (premature) birth
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 genetic specialists and kidney specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Genetic specialists (geneticists); Kidney specialists (nephrologists)
- 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 National Kidney Foundation and other patient organizations
- 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 (also called variants) cause this condition. GARD does not list the specific gene.
Also known as: mcdk; mckd - multicystic kidney disease; multicystic dysplastic kidney; multicystic kidneys; multicystic renal dysplasia
Patient organizations
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Multicystic kidney dysplasia.
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