An important discussion about a family condition
A guide to talking with your relatives about hereditary ATTR (hATTR) amyloidosis
Whether you have relatives with hATTR amyloidosis or you are the only one who has been diagnosed, the choice to talk with your family is an important first step in creating awareness. Educating your family about hATTR amyloidosis can help each of you make educated, health-conscious decisions about your future. Now is the time to start the conversation.
hATTR amyloidosis is a serious condition, and you may be unsure about how to begin the conversation with family members. Below are some helpful tips and suggestions that are designed to help start and facilitate meaningful discussions with your family.
You can be your family’s most valuable resource for learning about hATTR amyloidosis.
For some family members, it may be helpful for them to know that they have support from family members throughout the journey of the condition. Building a support system can help the entire family continue to make educated decisions about its future.
The first steps in starting a family conversation
Arm yourself with facts—the more you know about hATTR amyloidosis, the more you can help answer questions for your family members—and the better prepared you will be to manage your condition. Use the information on this site to familiarize yourself with the aspects of the condition.
Explain that hATTR amyloidosis is hereditary—highlighting the hereditary nature of the condition can help your family members understand why your condition may directly affect them.
The hATTR amyloidosis Family Health Tree tool can be used to help your family map your family health history with your relatives to see who may appear to be at risk for the condition.
Consider this: A family member may inherit the genetic mutation, but that does not mean he or she will develop hATTR amyloidosis. You may want to include this fact in your discussion about the hereditary aspect of the condition. This may also be something your family member can discuss further with a genetic counselor or healthcare professional.
Describe the variability in symptoms—help your family understand that hATTR amyloidosis can affect a number of organ systems in your body, including the nervous (nerve), cardiac (heart), and gastrointestinal (digestive), and that symptoms may vary widely from patient to patient, even among individuals in the same family. You may also want to include the fact that while symptoms may vary, some families do see a pattern develop. The age that initial symptoms appear may vary, ranging from the mid-20s to the mid-60s. These facts may help your family members stay open-minded about recognizing symptoms in their own history.
Educate on the possibility of misdiagnosis—explain that misdiagnosis is common with hATTR amyloidosis because the symptoms can resemble those of other conditions. Knowing the signs of the condition can help family members recognize the symptoms sooner and work with a healthcare professional to receive an accurate diagnosis.
Discuss diagnosis—encourage your family members to speak with their healthcare professional about how hATTR amyloidosis runs in the family and what the recommended next steps would be for them.
Talk about treatment—encourage your family members to talk to their healthcare professional about possible treatment options.