body, notice the symptoms, and talk to your medical providers to get tested as soon as possible,” she adds.
Giselle also stresses the significance of understanding your family’s medical history and genetic testing, particularly within the Black community, which has a one in 25 chance of carrying the genetic variant for the disease.
“It can be difficult at times,” Giselle says of discussing family history. “When I received my diagnosis, I sent emails, text messages, and literature to my family members on my dad’s side so they would be informed about the condition and talk to their providers about getting tested. Some family members may be in denial and not ready to hear that they may have inherited something.”
Despite the challenges you may encounter with family members, Giselle says It’s important to share information in a way that shows you care about their health and well-being.
“Some may delay seeking medical advice or diagnosis out of fear. It’s crucial to take time and communicate the seriousness of the issue so they can understand the need for action,” she notes.
By participating in the “Family Health History Road Trip”, Giselle hopes people will not only realize the importance of knowing your family history, but also that they have resources to help them along their journey.
“One of the key factors in understanding the condition is knowledge. A significant indicator of hATTR amyloidosis is a family history of the condition, as it is hereditary. Bilateral carpal tunnel is another key indicator. Accessing websites like hattrbridge.com/roadtrip can provide a wealth of information about the condition, including symptoms to look out for.” she says.
Advice from Giselle and Bernice on Navigating Family History & hATTR Amyloidosis
Create a checklist.
“Creating a checklist of symptoms and sharing it with your healthcare providers can help them make an educated determination about whether you may have the condition,” Giselle says.
“Having a checklist to share with your provider, indicating that you have a family member with this condition, is a significant step. Your physician may then suggest genetic testing, which is where knowledge becomes power, empowering individuals to take action,” Bennett adds.
Advocation is key.
“Once informed about hATTR amyloidosis, individuals can advocate for themselves and their family members. This resource can be invaluable for learning more about the condition and advocating for oneself,” Bennett says.
Think about the future generations.
“Family history is considered one of the most important risk factors for health problems. You need to know your family health history. It will help your family – it will help further generations,” Bennett notes.
Giselle, who can relate to the importance of family history, agrees.
“I truly believe this because my dad’s diagnosis prompted me to get tested. Even in his passing, he is still saving my life because I was diagnosed early enough to receive treatment before it became critical,” Giselle concludes.
To learn more about hATTR amyloidosis and the impact of family health history, click here.