Living with Fibronectin glomerulopathy
An inherited kidney disease with blood and protein in the urine, high blood pressure, and protein deposits in the kidneys' filters.
Understanding Fibronectin glomerulopathy
It usually develops between early and mid-adulthood but can occur at any age. The deposits make the kidneys filter waste less well. Many people eventually develop kidney failure about 15 to 20 years after symptoms start. A kidney transplant can be an option, though the disease sometimes comes back afterward.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blood in the urine (hematuria)
- Extra protein in the urine (proteinuria)
- High blood pressure
- Swelling in the legs (pedal edema)
- Nephrotic syndrome
- 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
Specialists who may be involved include genetic specialists and kidney specialists.
- 3Consider genetic testing
Changes in FN1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Genetic specialists (geneticists); 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
Changes in the FN1 gene cause it. It is autosomal dominant, which means one changed copy of the gene is enough.
Also known as: gfnd; glomerulopathy with fibronectin deposits
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 Fibronectin glomerulopathy.
Explore research for Fibronectin glomerulopathy
Explore actively recruiting Fibronectin glomerulopathy studies with HealthSpark.
Find actively recruiting studies for Fibronectin 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Fibronectin glomerulopathy studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Fibronectin glomerulopathy
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Fibronectin glomerulopathy experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.