Living with Primary membranoproliferative glomerulonephritis
A rare kidney disease that injures the kidney's filters, with kidney damage that often develops in adulthood.
Understanding Primary membranoproliferative glomerulonephritis
A kidney biopsy shows characteristic changes, including extra cells in parts of the filter and a thickened filter wall. Doctors divide it into C3 glomerulopathy and immunoglobulin-mediated types. Other causes such as autoimmune disease, infection and cancer are ruled out. It usually appears in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Long-term kidney disease
- High blood pressure
- Nephrotic syndrome (protein loss in the urine)
- Reduced kidney function
- Low complement C3 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.
- 4Connect with expert centers
NephCure Kidney International may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Kidney specialists (nephrologists)
- Expert care
- Expert lists: NephCure Kidney International
- 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 NephCure Kidney International 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 changes in genes cause this condition but doesn't name a gene. Other causes such as autoimmune disease, infection and cancer are ruled out for the primary form.
Also known as: mpgn; primary mpgn
Patient organizations
- NephCure Kidney InternationalPrimary membranoproliferative glomerulonephritis · 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 Primary membranoproliferative glomerulonephritis.
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