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.
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 familiarise 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 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 recognising 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 recognise 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.
Ron Sr. and Don, living with hATTR amyloidosisPlan 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.
Ron Sr. and Ron Jr., living with hATTR amyloidosisEmpower your family members to take action
Encourage a visit to a healthcare professional—whether 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.
A family living with hATTR amyloidosisReferences:
National Institutes of Health: Department of Health and Human Services. Genetics Home Reference. Transthyretin amyloidosis. https://ghr.nlm.gov/condition/transthyretin-amyloidosis. Accessed 22nd March 2017.
Hanna M, Curr Heart Fail Rep. 2014;11(1):50-57.
Damy T, J Cardiovasc Transl Res. 2015;8(2):117-127.
Hawkins PN, Ann Med. 2015;47(8):625-638.
Conceição I, J Peripher Nerv Syst. 2016;21(1):5-9.
Mohty D, Arch Cardiovasc Dis. 2013;106(10):528-540.
Shin SC, Mt Sinai J Med. 2012;79(6):733-748.
Ando Y, Orphanet J Rare Dis. 2013;8:31.
Coelho T, Curr Med Res Opin. 2013;29(1):63-76.
Adams D, Curr Opin Neurol. 2016;29(Suppl 1):S14-S26.
Ruberg FL, Circulation. 2012;126(10):1286-1300.
Sekijima Y, J Neurol Neurosurg Psychiatry. 2015;86(9):1036-1043.