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Living with AL amyloidosis

The most common form of amyloidosis, in which an abnormal protein builds up in organs and tissues.

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Understanding AL amyloidosis

AL amyloidosis is the most common form of amyloidosis, a group of disorders in which an abnormal protein called amyloid builds up in tissues and organs.

Symptoms vary because the buildup can happen in the tongue, intestines, muscles, joints, nerves, skin, ligaments, heart, liver, spleen, or kidneys. Doctors use blood or urine tests to look for amyloid protein, and a biopsy to confirm the diagnosis. GARD lists the onset as adulthood.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Tiredness (fatigue)
  • Heart problems, including thickened heart muscle
  • Kidney problems
  • Liver problems (hepatic amyloidosis)
  • Lung tissue changes
  • Erectile dysfunction

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include autoimmune and inflammatory disease specialists, blood and bone marrow specialists, brain and nervous system specialists and cancer specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect 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); Blood and bone marrow specialists (hematologists); Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
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
Bring these questions to your next doctor visit
Which organs are affected by amyloid in my case?
How will the biopsy and tests guide my care?
Which specialists should be on my care team?

Quick facts

Symptoms usually startAdult

GARD says it involves a buildup of an abnormal protein called amyloid. It doesn't describe a gene cause.

NeurologicalKidneyBlood

Also known as: al; amyloid light-chain amyloidosis; amyloidosis, systemic; immunoglobulin-related amyloidosis; light-chain amyloidosis; primary amyloidosis

Patient organizations

Source: NIH GARD · AL amyloidosisGARD ID 5797 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

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Explore research for AL amyloidosis

Explore actively recruiting AL amyloidosis studies with HealthSpark.

HealthSpark

Find actively recruiting studies for AL 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

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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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