Living with Finnish congenital nephrotic syndrome
A rare kidney condition present from birth with heavy protein loss in the urine and marked swelling, starting before birth or in the first 3 months.
Understanding Finnish congenital nephrotic syndrome
It affects the kidney filters, which leak large amounts of protein. Signs show up during pregnancy, at birth, or in the first months of infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Heavy protein loss in the urine (nephrotic syndrome)
- Marked swelling (edema)
- Abnormal kidney tubules
- Delayed permanent teeth
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 NPHS1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
NephCure Kidney International may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Kidney specialists (nephrologists)
- 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 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 NPHS1 gene cause it. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: cnf - finnish congenital nephrotic syndrome; congenital finnish nephrosis; congenital nephrotic syndrome - finnish type; congenital nephrotic syndrome, finnish type; finnish congenital nephrosis; nephrotic syndrome - nphs1 associated
Patient organizations
- NephCure Kidney InternationalFinnish congenital nephrotic syndrome · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Finnish congenital nephrotic syndrome.
Explore research for Finnish congenital nephrotic syndrome
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