Living with Glomerulopathy with fibronectin deposits 2
A family-linked 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 2
It causes protein to leak into the urine, blood in the urine, and high blood pressure. This can lead to kidney failure between ages 20 and 50. Kidney tissue under a microscope shows glomeruli (the kidney's tiny filters) that are bigger than normal and have deposits of fibronectin, a protein that helps cells stick together.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Protein leaking into the urine
- Blood in the urine
- High blood pressure
- Nephrotic syndrome (heavy protein loss in the urine)
- Reduced kidney function
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
GARD lists autosomal dominant inheritance, which means one changed copy of a gene can be enough. It does not name the gene.
Also known as: fibronectin glomerulopathy caused by mutation in fn1; fn1 fibronectin glomerulopathy; gfnd2; glomerulopathy with fibronectin deposits type 2
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 2.
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