Living with Glomerulopathy with fibronectin deposits 1
A genetic kidney disease with protein and blood in the urine and high blood pressure that can lead to kidney failure in adulthood.
Understanding Glomerulopathy with fibronectin deposits 1
People have too much protein in the urine, microscopic blood in the urine, and high blood pressure, which can lead to kidney failure between ages 20 and 50. Doctors can diagnose it by looking at kidney tissue under a microscope, where the kidney is enlarged and has too much fibronectin, a protein.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Too much protein in the urine (proteinuria)
- Blood in the urine seen only under a microscope
- High blood pressure (hypertension)
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 rare disease patient organizations for support
- 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
It is caused by a problem in a gene on chromosome 1q32 and is inherited in an autosomal dominant way, which means one changed copy of the gene from a parent is enough.
Also known as: familial lobular glomerulopathy; gfnd1; glomerulopathy with giant fibrillar deposits
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Glomerulopathy with fibronectin deposits 1.
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