Living with Familial visceral amyloidosis, Ostertag type
A group of rare inherited kidney diseases in which abnormal protein (amyloid) builds up in organs, especially the kidneys.
Understanding Familial visceral amyloidosis, Ostertag type
Kidney problems that can lead to chronic kidney disease and kidney failure are a common sign. Other signs depend on which organ is affected and which amyloid protein is deposited. It can show up at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Kidney disease (nephropathy)
- Reduced kidney filtering
- High blood pressure
- Amyloid deposits in the kidneys
- Kidney inflammation
- Digestive tract problems
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 autoimmune and inflammatory disease specialists, genetic specialists and kidney specialists.
- 3Consider genetic testing
Changes in FGA 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
Amyloidosis Support Groups Inc. and Amyloidosis Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Genetic specialists (geneticists); Kidney specialists (nephrologists)
- Expert care
- Expert lists: Amyloidosis Support Groups Inc., Amyloidosis Foundation
- 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 Amyloidosis Support Groups Inc. 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 FGA gene cause it. It is autosomal dominant, which means one changed copy of the gene is enough.
Also known as: amyld2; amyloid nephropathy of ostertag; amyloidosis viii; amyloidosis, 3 or more types; amyloidosis, familial renal; amyloidosis, hepatic and systemic
Patient organizations
- Amyloidosis Support Groups Inc.Familial visceral amyloidosis, Ostertag type · United States
- Amyloidosis FoundationFamilial visceral amyloidosis, Ostertag type · 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 visceral amyloidosis, Ostertag type.
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