Living with Bartter syndrome type 4
A genetic condition that mainly affects the kidneys and hearing, and shows up before birth.
Understanding Bartter syndrome type 4
This condition can begin during pregnancy, with extra amniotic fluid (polyhydramnios) and early delivery. It affects how the kidneys handle salt and water. Blood tests often show low potassium and chloride and high renin and aldosterone (hormones that help control blood pressure). Blood pressure is low to normal.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hearing loss in both ears (sensorineural)
- Chronic kidney disease
- Premature birth
- Slow weight gain (failure to thrive)
- Low muscle tone and muscle weakness
- Delays in standing and walking
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 ear, nose, and throat specialists, 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
- Ear, nose, and throat specialists (otolaryngologists); 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 cause this condition. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: bartter syndrome type iv; bartter syndrome with sensorineural deafness; bartter syndrome with sensorineural hearing loss; bartter's syndrome type 4; infantile bartter syndrome with sensorineural deafness
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 Bartter syndrome type 4.
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