When a loved one has been diagnosed with a life-threatening condition it can be overwhelming, and caring for that person can feel like a full-time job. Following Randy’s diagnosis, Priscilla quickly realized that their daily lives would be changed drastically. “When he was first diagnosed, I was surprised because he had always been very healthy. Overall, I would say my reaction was shock.” Quickly following the diagnosis, Priscilla started to pick up even more responsibility around their house, in addition to helping Randy manage his ATTR-CM. “Randy can’t do as much as before; we had to change our lifestyle,” she said.
When asked what advice Priscilla had for other caregivers of ATTR-CM patients, she mentioned, “It is critical to get as much information as you can, and really do your research.” Randy and Priscilla are advocates for bringing attention to this condition, as they believe there is not nearly enough education and awareness surrounding ATTR-CM. Priscilla said, “People should know about this condition, so they can monitor and be aware moving forward.” Randy added, “Once we got the diagnosis, our cardiologist was the main source of information, however, even the doctor had limited information. There needs to be a lot more done to publicize the symptoms of this disease, so people can be more aware and get tested early.”
It is important for caregivers of heart failure patients to educate themselves on ATTR-CM and advocate for their loved ones – even when symptoms may not seem relevant to heart failure – in order to reach an accurate and timely diagnosis. If you have heart failure, or are a caregiver of a heart failure patient, and the symptoms of ATTR-CM sound familiar, talk to your cardiologist, and check out www.YourHeartsMessage.com to learn more about this condition.
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1 Sipe JD, Benson MD, Buxbauym JN, et al. Amyloid fibril proteins and amyloidosis: chemical identification and clinical classification. Amyloid. 2016;23(4): 209-213
2 Connors LH, Sam F, Skinner M, et al. Heart failure due to age-related cardiac amyloid disease associated with wild-type transthyretin: a prospective, observational cohort study. Circulation. 2016;133(3):282-290.
3 Maurer MS, Elliott P, Comenzo R, Semigran M, Rapezzi C. Addressing common questions encountered in the diagnosis and management of cardiac amyloidosis. Circulation. 2017;135(14):1357-1377