This World Amyloidosis Day, Be the Link

That could all begin to change starting this October 26.

This year, for the first time, World Amyloidosis Day is being recognized by advocates, clinicians and patient organizations working hard to bring amyloidosis to the forefront. Spearheaded by the Amyloidosis Alliance, World Amyloidosis Day is meant to raise awareness and thus improve the diagnostic delays that many patients face.

Those delays can often be significant. Degenerative and debilitating, amyloidosis is a rare disease caused by a build-up of abnormal proteins in different bodily organs. It occurs in both hereditary and non-hereditary forms. The disease is complex and difficult to diagnose, in large part because symptoms vary widely from one type of amyloidosis to another.

Currently it takes patients about four years to reach a diagnosis of amyloidosis. In that time, they consult an average of four different medical specialists. For a degenerative disease like amyloidosis, this lost time is imperative in achieving a successful treatment process and can often lead to debilitating physical impacts that can never be reversed.

But advocates want to change that.

World Amyloidosis Day is an opportunity to raise awareness about amyloidosis, contributing to faster diagnoses, and eventually, better access to treatment. But, even more importantly, the day is about bringing people together. Receiving a diagnosis for a rare disease can leave people feeling isolated and scared. On World Amyloidosis Day, patients, carers, family and clinicians come together to let people know that they are not alone. These advocates can “be the link,” supporting amyloidosis patients across the globe and working to expand knowledge and recognition of the disease.

To learn more about World Amyloidosis Day and ways to get involved, visit worldamyloidosisday.org.