Living with C1q nephropathy
A kidney disease in which a lot of protein is lost in the urine and a protein called C1q collects in the kidneys.
Understanding C1q nephropathy
C1q is a normal immune protein, but in this disease it is deposited throughout the kidneys. It is similar to minimal change disease and focal segmental glomerulosclerosis. Children and adults may have no symptoms other than blood or protein in the urine, or may have swelling of the feet and legs, high blood pressure, and reduced kidney function.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Protein in the urine
- Blood in the urine
- Swelling of the feet and legs
- High blood pressure
- 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.
- 4Connect with expert centers
NephCure Kidney International may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: NephCure Kidney International
- 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 NephCure Kidney International
- 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 doesn't describe a cause for this condition yet. C1q protein collects in the kidneys, and lupus must be ruled out for the diagnosis.
Patient organizations
- NephCure Kidney InternationalC1q nephropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with C1q nephropathy.
Explore research for C1q nephropathy
Explore actively recruiting C1q nephropathy studies with HealthSpark.
Find actively recruiting studies for C1q nephropathy 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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