Living with ATTRV30M amyloidosis
An inherited condition that gradually affects the nerves that control movement, feeling, and body functions like digestion, often starting in adulthood.
Understanding ATTRV30M amyloidosis
The autonomic nervous system controls involuntary functions like heart rate and digestion. It typically starts in adulthood and gets more severe over time. It often leads to weight loss and heart problems and may also cause eye or kidney problems.
Signs & symptoms
GARD doesn't list specific symptoms for this condition, but its summary describes these features:
- Nerve problems with movement and sensation
- Problems with involuntary body functions (autonomic nerves)
- Weight loss
- Heart problems
- Eye or kidney problems in some people
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, eye 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); Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); 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 this condition but doesn't list the gene or inheritance pattern in this record.
Also known as: amyloid polyneuropathy type i; amyloidosis, type i; andrade syndrome; andrade type amyloid polyneuropathy; attrv30m-related amyloidosis; corino de andrade paramyloidosis
Patient organizations
- Amyloidosis Support Groups Inc.ATTRV30M amyloidosis · United States
- Amyloidosis FoundationATTRV30M amyloidosis · United States
- Amyloidosis Research ConsortiumATTRV30M amyloidosis · United States
- Hypertrophic Cardiomyopathy AssociationATTRV30M amyloidosis · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · 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 ATTRV30M amyloidosis.
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