Tomorrow marks World Amyloidosis Day, and we at Prothena are proud to join the Amyloidosis Alliance to help raise awareness of amyloidosis, a complex disease often misunderstood and misdiagnosed by medical professionals and unheard of by the general public.

In the below video, Steve, living with AL amyloidosis, talks about the difficult and long journey to his diagnosis. It took a year or more of worsening symptoms — from stomach issues to fatigue to loss of weight — coupled with six or more different doctors for him to finally arrive at his diagnosis. And when he did, it felt quite grim.

However, with the help of doctors, support organizations and his family, Steve has lived with the disease for over 13 years and is hopeful for the future. He also shares some advice for those recently diagnosed with AL amyloidosis.

Stories like Steve’s inspire us at Prothena to continue to innovate for those in the amyloidosis community — patients, caregivers, medical professionals and scientists.

Learn more about the long journey to an AL amyloidosis diagnosis from others directly impacted by the rare disease here.