Living with Lipoprotein glomerulopathy
A rare inherited kidney disease in which fat-protein particles build up in the kidney's filters.
Understanding Lipoprotein glomerulopathy
Tests show abnormal blood fat levels, especially very high apolipoprotein E. Signs can include protein in the urine or nephrotic syndrome with high blood pressure, and kidney function can decline. Systemic complications of abnormal blood fats are not seen.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes these signs:
- Protein in the urine (proteinuria)
- Nephrotic syndrome
- High blood pressure
- High apolipoprotein E in the blood
- Declining 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, hormone specialists and kidney specialists.
- 3Consider genetic testing
Changes in APOE 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); Hormone specialists (endocrinologists); 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
It is caused by changes in the APOE gene. A person can have it after inheriting one changed copy of the gene (autosomal dominant).
Also known as: lpg
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 Lipoprotein glomerulopathy.
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