Living with Nail-patella-like renal disease
A rare inherited kidney condition with protein and blood in the urine, without the nail and bone changes of nail-patella syndrome.
Understanding Nail-patella-like renal disease
It causes kidney disease (nephropathy) of varying severity, with tiny amounts of blood and protein in the urine. People do not have the nail and bone changes seen in nail-patella syndrome. GARD lists onset in the newborn period and infancy.
Signs & symptoms
GARD lists these features:
- Kidney filter disease (glomerulopathy)
- High blood pressure
- Reduced kidney function
- Short stature
- Blood in the urine (microscopic)
- Protein in the urine
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 LMX1B 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
GARD lists changes in the LMX1B gene. The condition is autosomal dominant, which means one changed copy of the gene can be enough to cause it.
Also known as: focal segmental glomerulosclerosis 10; glomerular basement membrane disease, nail-patella syndrome type; nail patella-like renal disease; salcedo syndrome
Patient organizations
- NephCure Kidney InternationalNail-patella-like renal disease · 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 Nail-patella-like renal disease.
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