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 factsthe 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 hereditaryhighlighting 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 symptomshelp 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 misdiagnosisexplain 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 diagnosisencourage 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 treatmentencourage your family members to talk to their healthcare professional about possible treatment options.

Plan ahead—create an outline of the topics you’d like to include and the points you’d like to make during your conversations. If you feel comfortable, you can include points from your personal experience with hATTR amyloidosis. This may help facilitate a productive and informed conversation.

Start with the basics—beginning the conversation could be as simple as "I want to talk to you about a condition I have." You can help set the tone of the discussion by sharing the information that seems most important to the relative you’re speaking with. Consider talking about your first symptoms, the healthcare professionals you visited, your journey to diagnosis (including any misdiagnosis you may have received), and how you manage the condition.

Anticipate questions—it may be helpful to write down the questions you asked when you were first diagnosed with hATTR amyloidosis. This may give your family members some ideas of questions to ask their own healthcare professionals. Each person may have a different reaction to your story, and it’s important to take each point of view into consideration.

Talking with children—speaking to children about hATTR amyloidosis can be difficult, and you may ask yourself if or when you should have the conversation. Here are some approaches you may take to help you have a discussion with a child:

"I have some news to share with you. We found out what is going on with your dad."
"What are you thinking right now? It’s okay to be scared, angry, or anything else. I feel sad and a little scared myself."

It’s important to be open with children and to encourage them to ask questions.

Consider the setting

Keep conversations intimate—if you feel that one-on-one conversations may work best for some family members, you can speak with each person individually. Some family members may feel more comfortable if their spouse or significant other is there with them to listen. It’s important to consider your audience when having the discussion. Ask your relatives to meet you for coffee or lunch, or visit them at their home.

Make a phone call—your family members may not live close by, but a phone call can still be an effective way to start the conversation.

Host a discussion at your home—if you have relatives who live close by, invite them to your house for a group discussion about hATTR amyloidosis and your family’s health history. Consider printing out the hATTR amyloidosis Family Health Tree tool and asking your relatives to complete it so you can discuss the results together.

I want my kids to get tested within the next few years.—Sandie
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Empower your family members to take action

Encourage a visit to a healthcare professionalwhether or not your family members have experienced any symptoms, it is a good idea for them to speak with their healthcare professional and inform them of how this condition has impacted their family. Together, they can discuss action plans and next steps.

Talk about genetic counseling—Genetic counseling can help your family members understand their chances of inheriting the gene mutation and become familiar with the testing process and implication of a diagnosis. A counselor can also help them understand the issues related to genetic testing, from personal risk to possible insurance impact, and can help them determine if a genetic test may be right for them.

A genetic test will tell a person if he or she carries a mutation in the TTR gene associated with hATTR amyloidosis. Once a gene mutation is identified, family members of an affected individual can use this information to help determine their own risk.

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 you will be there for them throughout their journey with hATTR amyloidosis. Building a support system can help the entire family continue to make educated decisions about their future.

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Download the Family Discussion Guide, a tool that can help you start the conversation about hATTR amyloidosis with your family.

Read about one family's journey living with hATTR amyloidosis »

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