Living with Autosomal dominant medullary cystic kidney disease with or without hyperuricemia
A group of inherited kidney conditions (ADTKD) that cause slowly worsening kidney function.
Understanding Autosomal dominant medullary cystic kidney disease with or without hyperuricemia
Urine tests show little or no blood or protein. Kidney ultrasound is usually normal early on, but some people have cysts in the center of the kidneys (medullary cysts). Most people have a family history of kidney disease. It can start at a variety of ages.
Signs & symptoms
GARD says signs and symptoms of all forms include:
- Slowly worsening kidney disease
- Urine with little blood or protein
- Cysts in the center of the kidneys (in some)
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 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
GARD says it is inherited in an autosomal dominant way, meaning one changed copy of the gene can be enough to cause it. Diagnosis can be confirmed by genetic testing.
Also known as: adtkd; autosomal dominant interstitial kidney disease; autosomal dominant medullary cystic kidney disease; autosomal dominant tubulointerstitial kidney disease; familial juvenile hyperuricemic nephropathy; mckd
Patient organizations
- American Association of Kidney PatientsAutosomal dominant medullary cystic kidney disease with or without hyperuricemia · United States
- Rare Kidney Disease FoundationAutosomal dominant medullary cystic kidney disease with or without hyperuricemia · 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 Autosomal dominant medullary cystic kidney disease with or without hyperuricemia.
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