Living with AA amyloidosis
A condition in which a protein builds up in organs, usually starting in the kidneys, after long-lasting infection or inflammation.
Understanding AA amyloidosis
It is also called secondary or inflammatory amyloidosis. It is caused by a long-lasting infection or inflammatory disease such as rheumatoid arthritis, familial Mediterranean fever, or osteomyelitis. These raise serum amyloid A (SAA) protein, which forms deposits around cells. It usually starts in the kidneys, but the liver and spleen can also be affected. GARD lists onset as from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Kidney disease (nephrotic syndrome)
- Abdominal pain
- Nausea and vomiting
- Chronic diarrhea
- Enlarged liver
- Low blood pressure
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, brain and nervous system specialists, heart and blood vessel 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
Amyloidosis Support Groups Inc., Amyloidosis Foundation and Amyloidosis Research Consortium may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Heart and blood vessel specialists (cardiologists); Kidney specialists (nephrologists)
- Expert care
- Expert lists: Amyloidosis Support Groups Inc., Amyloidosis Foundation, Amyloidosis Research Consortium
- 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
A long-lasting infection or inflammatory disease, such as rheumatoid arthritis or familial Mediterranean fever, causes extra SAA protein that forms deposits in organs.
Also known as: amyloid a amyloidosis; inflammatory amyloidosis; reactive amyloidosis; secondary amyloidosis
Patient organizations
- Amyloidosis Support Groups Inc.AA amyloidosis · United States
- Amyloidosis FoundationAA amyloidosis · United States
- Amyloidosis Research ConsortiumAA amyloidosis · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with AA amyloidosis.
Explore research for AA amyloidosis
Explore actively recruiting AA amyloidosis studies with HealthSpark.
Find actively recruiting studies for AA amyloidosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting AA amyloidosis studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for AA amyloidosis
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your AA amyloidosis experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.