Living with Immunotactoid or fibrillary glomerulopathy
Two uncommon kidney diseases, often grouped together, with blood and protein in the urine.
Understanding Immunotactoid or fibrillary glomerulopathy
Experts see them as separate but similar, and some group them together. An electron microscope can tell them apart by the size and shape of the deposits. Fibrillary glomerulonephritis is much more common. It usually begins in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Blood in the urine
- Protein in the urine
- Reduced kidney function
- 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. Both have been linked with hepatitis C infection, cancer, and autoimmune disease. People should be screened for these and for amyloidosis.
Also known as: immunotactoid or 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 Immunotactoid or fibrillary glomerulopathy.
Explore research for Immunotactoid or fibrillary glomerulopathy
Explore actively recruiting Immunotactoid or fibrillary glomerulopathy studies with HealthSpark.
Find actively recruiting studies for Immunotactoid or fibrillary glomerulopathy with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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