Living with Non-amyloid fibrillary glomerulopathy
An uncommon kidney condition in which deposits build up in the kidney's filters, often causing blood and protein in the urine.
Understanding Non-amyloid fibrillary glomerulopathy
It probably results from deposits made of immunoglobulins (antibody proteins). In most cases the cause is unknown. Diagnosis is made with a kidney biopsy and electron microscopy. It is very similar to a rarer condition, immunotactoid glomerulopathy. GARD lists adult as the usual onset.
Signs & symptoms
GARD describes these signs and symptoms in its summary:
- Blood in the urine (hematuria)
- Protein in the urine (proteinuria)
- Reduced kidney function (kidney insufficiency)
- High blood pressure
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 kidney specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- 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
In most cases the cause is unknown. GARD says it probably results from deposits derived from immunoglobulins. It has been linked to hepatitis C infection, cancer, and autoimmune disease, so people should be screened for these.
Also known as: congo red negative amyloidosis like glomerulopathy; congo red-negative amyloidosis-like glomerulopathy; fibrillary glomerulonephritis; non-amyloid fibrillary glomerulonephritis
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 Non-amyloid fibrillary glomerulopathy.
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