Most people are unfamiliar with amyloidosis, often diagnosed late since they are unaware of what this rare disease is or what the symptoms are. The Amyloidosis Foundation is working to change that, declaring March as Amyloidosis Awareness Month.
Charlotte Haffner, a member of the AF Board of Directors and an amyloidosis patient herself, says “Raising awareness for amyloidosis is one of the most important things you can do as a patient or if your life has been touched by this disease. You can help more people understand amyloidosis, and help raise funds for research, education, and one day a cure. Today there is more hope than ever. Please use your power as a patient or care-giver and spread the word far and wide. You never know whose life you might help save. It could even be your own.”
We began in 2018, by passing state resolutions to recognize Amyloidosis Awareness Month in Tennessee, Michigan and Louisiana. Indiana passed a resolution in January 2019. We have advocates working on similar legislation in the following states for 2019: Arkansas, California, Florida, Georgia, Kentucky, Nebraska, New York, Pennsylvania, Utah, Virginia and Wisconsin.
The AF is encouraging patients, caregivers, physicians and donors to participate this March by using the hashtag #amyloidosiswarrior on all social media platforms. By spreading amyloidosis awareness online, this will increase the chances that others will be diagnosed and treated earlier, which is an important part to creating positive outcomes for all patients.
We are thankful that in the Summer of 2018, two therapies were approved by the FDA for ATTR amyloidosis, which is the hereditary type of this disease. For more information about Amyloidosis Awareness Month, or if you’d like to become an advocate, email [email protected]