Living with Familial idiopathic steroid-resistant nephrotic syndrome
An inherited kidney condition with protein in the urine and swelling that does not respond to steroid medicine.
Understanding Familial idiopathic steroid-resistant nephrotic syndrome
It causes protein in the urine (proteinuria), low albumin in the blood, swelling (edema), and high blood fats. Onset can be at a variety of ages. GARD describes a generally complicated course.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fluid retention and swelling (edema)
- Swelling around the eyes
- Chronic kidney disease
- Scarring in parts of the kidney (FSGS)
- Foamy urine
- Advanced kidney disease (stage 5)
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.
- 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
- 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 genes cause it. It can be inherited in an autosomal dominant or autosomal recessive way.
Also known as: familial idiopathic nephrotic syndrome; genetic srns; genetic steroid-resistant nephrotic syndrome; hereditary steroid-resistant nephrotic syndrome
Patient organizations
- NephCure Kidney InternationalFamilial idiopathic steroid-resistant 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 Familial idiopathic steroid-resistant nephrotic syndrome.
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