Living with Medullary sponge kidney
A birth difference in the kidneys' tiny tubes, causing a sponge-like look. Many have no symptoms, while some get kidney stones.
Understanding Medullary sponge kidney
Tiny cysts form in the inner part of the kidney, giving it a sponge-like look. The cysts keep urine from flowing freely. Many people have no symptoms. Others may have blood in the urine, kidney stones, and urinary tract infections. Rarely it leads to chronic pain or kidney failure.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blood in the urine (hematuria)
- Kidney stones
- Urinary tract infections
- Chronic pain (rarely)
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.
- 3Consider genetic testing
Changes in HNF1B are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
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 American Association of Kidney Patients 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
The cause is unknown, but some cases may run in families. The record lists the HNF1B gene and autosomal dominant inheritance.
Also known as: cacchi-ricci disease; msk; precalicial canalicular ectasia
Patient organizations
- American Association of Kidney PatientsMedullary sponge kidney · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Medullary sponge kidney.
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