Living with Hereditary amyloidosis
A group of inherited conditions in which an abnormal protein builds up in the heart, kidneys, and nerves.
Understanding Hereditary amyloidosis
The deposits disrupt how organs are built and work. They most often form in the heart, kidneys, and nervous system. Symptoms may appear in childhood, but most people do not notice them until adulthood. There are many types, linked to different genetic changes and proteins. The most common is transthyretin amyloidosis (ATTR).
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on the summary, amyloid can affect:
- Heart
- Kidneys
- Nervous system
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 and genetic 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); Genetic specialists (geneticists)
- 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 says changes in genes (also called variants) cause hereditary amyloidosis. Different types are linked to different genetic changes. Most types are autosomal dominant, so one changed copy of the gene is enough.
Also known as: amyloidosis, familial; hereditary amyloidosis (disease)
Patient organizations
- Amyloidosis Support Groups Inc.Hereditary amyloidosis · United States
- Amyloidosis FoundationHereditary amyloidosis · United States
- Amyloidosis Research ConsortiumHereditary amyloidosis · United States
- Hypertrophic Cardiomyopathy AssociationHereditary amyloidosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary amyloidosis.
Explore research for Hereditary amyloidosis
Explore actively recruiting Hereditary amyloidosis studies with HealthSpark.
Find actively recruiting studies for Hereditary amyloidosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- 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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