Living with Progressive hereditary glomerulonephritis without deafness
A rare genetic condition with high blood pressure and kidney damage that starts in adulthood.
Understanding Progressive hereditary glomerulonephritis without deafness
Blood pressure goes up in adulthood and is linked with kidney damage that slowly gets worse. The kidney damage may eventually lead to end-stage kidney disease. Tests may show scarring and thinning in the kidney tissue, protein in the urine, and a higher creatinine level in the blood.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes these features:
- High blood pressure that starts in adulthood
- Kidney damage that worsens over time
- Protein in the urine (proteinuria)
- Raised creatinine level in the blood
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
GARD lists autosomal dominant inheritance, meaning one changed copy of a gene from a parent is enough. It doesn't name a gene here.
Also known as: autosomal dominant progressive nephropathy with hypertension; familial nephropathy; nephritis, familial, without deafness or ocular defect; nephropathy-hypertension; nephropathy, familial; renal failure, adult-onset
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 Progressive hereditary glomerulonephritis without deafness.
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