Blog
March is Amyloidosis Awareness Month
In 2008, Charlotte was a healthy, active 55-year-old who loved the outdoors, especially taking care of her horses. Then, one day she started feeling different: fatigued, retaining fluid, shortness of breath. The following months dragged on. Routine testing offered no explanation for her heart failure. Her condition deteriorated. “I sat on the hillside behind my house and prayed. I was dying, and I knew it,” Charlotte says.
Then she was referred to cardiologist Joseph Fredi, MD. He had an idea what was wrong. Tests confirmed it. Charlotte has primary AL amyloidosis. “I asked Dr. Fredi if it was fatal, and he held back for a minute, and he said, ‘I'm afraid it could be,'” Charlotte remembers. “I said to him, ‘Well, it won't be this time.'”
Eleven years later, Charlotte has undergone heart transplant and peripheral blood stem cell transplant. She helped found VAMP (Vanderbilt Amyloidosis Multidisciplinary Program); joined the Board of the Amyloidosis Foundation (AF), where she has “a platform to help other patients”; and became the first patient enrolled in a first-in-human, phase 1 clinical trial testing a new amyloid-binding peptide for detecting amyloid. She also convinced Tennessee State Representative Glen Casada to sponsor a resolution that led to Tennessee becoming the first state to declare March Amyloidosis Awareness Month. Help ASNC raise awareness by advocating for your state to pass legislation to declare March as Amyloidosis Awareness Month. Email Charlotte Haffner for information on getting started.
ASNC is committed to helping patients like Charlotte. We are working to raise awareness of the disease while providing education and guidelines to help clinicians make timely, accurate diagnoses. To learn more about ASNC's cardiac amyloidosis programs and access the new 99m Technetium-Pyrophosphate Imaging for Transthyretin Cardiac Amyloidosis Practice Points, visit ASNC's Cardiac Amyloidosis Resource Center.