Living with Alport syndrome
A genetic condition that affects the kidneys, hearing, and eyes, with blood in the urine and slowly declining kidney function.
Understanding Alport syndrome
Kidney function slowly declines over time. Almost everyone has blood in the urine (hematuria), and many have high protein in the urine. Many people develop hearing loss from inner ear differences in late childhood or early adolescence. Some have a misshapen eye lens or color changes in the retina, which seldom lead to vision loss.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blood in the urine (hematuria)
- Slowly declining kidney function
- High blood pressure
- Hearing loss in late childhood or adolescence
- Protein in the urine
- Misshapen eye lens
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, eye disease 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); Eye disease specialists (ophthalmologists); 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 Alport Syndrome 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
GARD says Alport syndrome is genetic. It lists autosomal dominant, autosomal recessive, and X-linked inheritance, but doesn't name a gene on this page.
Also known as: alport deafness-nephropathy; alport hearing loss-nephropathy; alport's syndrome; congenital hereditary hematuria; hemorrhagic familial nephritis; hemorrhagic hereditary nephritis
Patient organizations
- Alport Syndrome FoundationAlport syndrome · United States
- American Association of Kidney PatientsAlport syndrome · 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 Alport syndrome.
Explore research for Alport syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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