Skip to content

Amyloidosis Awareness Marches Forward

March is Amyloidosis Awareness Month, dedicated to raising the profile of a complex condition, supporting patients and encouraging research investment.

Amyloid proteins occur naturally in the body, but when those proteins build up in organs, organ function declines. The heart, liver, kidneys, digestive tract and nervous system are most commonly impacted, and advanced buildup can be life threatening, causing vital organs to fail.

The Difficulty of Diagnosing Amyloidosis

Amyloidosis is notoriously difficult to diagnose because it has many subtypes, and symptoms vary widely based on the organs affected. Patients may receive several incorrect diagnoses before the true cause is discovered. In fact, one study showed that the median time from onset of symptoms to an accurate diagnosis was nearly one year.

The resulting delays in care allow symptoms to progress, impacting both the mental and physical health of a patient. Providers might not think to test for amyloidosis when patients present with common symptoms like kidney dysfunction, bowel issues, low blood pressure or shortness of breath. But prompt diagnosis can increase survival rates, and treatments may greatly improve patients’ quality of life.

The population most impacted by new amyloidosis diagnoses is men between 60 and 70. Chronic disease, dialysis treatment and genetic history also increase risks. People of African descent seem to be at higher risk of certain kinds of amyloidosis, particularly a genetic mutation that predisposes the heart to protein buildup. Early identification and treatment are thus issues of social equality, and promoting equal access should be part of broad treatment strategies.

Innovative Treatment and Hope for the Future

The annual goal of raising awareness about amyloidosis and the patients it impacts remains critical as treatments improve.

Until very recently, patients diagnosed with amyloidosis had a life expectancy of just a few years. But with innovative treatment and earlier diagnoses, treating symptoms and even slowing the disease are now within patients’ grasp.

Ongoing research and investment can continue this progress, delivering diagnoses, treatment and hope for a brighter future.