Living with Immunotactoid glomerulopathy
A very uncommon kidney disease in adults with blood and protein in the urine.
Understanding Immunotactoid glomerulopathy
It is related to a more common disease called fibrillary glomerulopathy. A kidney sample under an electron microscope shows tube-like structures larger than those of the related disease. 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. It has been associated with hepatitis C infection, cancer, and autoimmune disease. People are screened for these, including a higher risk of certain blood cancers.
Also known as: fgn; fibrillary glomerulonephritis; immunotactoid 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 glomerulopathy.
Explore research for Immunotactoid glomerulopathy
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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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