Inspired by the traditional family road trip, join us as we travel across the country to meet people living with hereditary ATTR (hATTR) amyloidosis to learn about the impact of the disease across generations. We'll hear personal accounts of their symptoms, journeys to diagnosis, and how they navigated conversations with their families about this genetic condition, as well as insights from an expert in the disease.
Hosted by genealogist and health education specialist Bernice Bennett, the Family Health History Road Trip showcases the importance of understanding your family health history. Jumpstarting a conversation with your family about health history can be challenging, but with rare, hereditary conditions that may worsen quickly over time such as hATTR amyloidosis, these conversations can be crucial to receiving an earlier diagnosis and starting a disease management plan sooner.
Our host, Bernice, introduces the important role family history plays in health.
Join Bernice throughout this video series as she embarks on a road trip across the country to meet with hATTR amyloidosis expert Dr. Saurabh Malhotra, as well as Giselle, Christine, and Julio and Renee, who share their journeys with hATTR amyloidosis and how they approached family conversations about this inherited disease.
For our first stop, we travel to Chicago, IL, to hear from hATTR amyloidosis expert Dr. Saurabh Malhotra, who provides an overview of the disease and the important role family health conversations and genetic testing can play in driving earlier diagnosis.
Next, we meet Giselle in Hazel Crest, IL, to talk about how her father's hATTR amyloidosis diagnosis ultimately led to her own diagnosis with this genetic condition.
Join us in Indianapolis, IN, where we meet Christine. After years of searching for answers to explain her mysterious symptoms, Christine was finally diagnosed with hATTR amyloidosis and is raising awareness with her own family.
On our last stop, we visit Julio and his daughter and caregiver, Renee, in Somerset, MA. Together they discuss how Julio's hATTR amyloidosis diagnosis revealed the "mystery illness" that had impacted their Portuguese relatives for generations.
Bernice reflects on her journey and the ways family health conversations can play a crucial role in the timely diagnosis and management of hATTR amyloidosis.
Bernice Bennett is a genealogist, health education specialist, author, and radio host. She has spent over 35 years working in a variety of healthcare settings, with a focus on community health and patient education. She is a nationally recognized speaker and has authored three books, which examine history and trace the genealogy of African American ancestors.
Resources
Thanks for following along. To connect with an Alnylam Patient Education Liaison (PEL) who can answer questions about this disease, click here.
If you would like to learn more about starting a conversation with your family about hATTR amyloidosis, download this Family Discussion Guide.
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An Alnylam Patient Education Liaison (PEL) can answer questions about this disease
