Living with Amyloidosis
A group of conditions in which abnormal proteins called amyloids build up in organs, making them stiff and less able to work.
Understanding Amyloidosis
The deposits can collect in organs such as the kidney and heart and make them stiff so they can't work as they should. There are three main types: primary (no known cause), secondary (caused by another disease, including some cancers), and familial (passed down through genes). It can start at any time in life.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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.
- 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)
- 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
GARD describes three types: primary, with no known cause; secondary, caused by another disease; and familial, passed down through genes.
Also known as: amyloid; amyloid deposition; amyloid disease; amyloidoses; amyloidosis (disease)
Patient organizations
- Amyloidosis Support Groups Inc.Amyloidosis · United States
- Amyloidosis FoundationAmyloidosis · United States
- Amyloidosis Research ConsortiumAmyloidosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Amyloidosis.
Explore research for Amyloidosis
Explore actively recruiting Amyloidosis studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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