Talking with your relatives about an hATTR amyloidosis diagnosis

By educating your family about hereditary ATTR (hATTR) amyloidosis, you are helping to strengthen the support network around you and are empowering them to make informed, health-conscious decisions about their future.

Arm yourself with facts

• Your family will probably have questions about this rare condition. Knowing the basic facts can help you take the first steps to starting the conversation with your family

Explain that hATTR amyloidosis is hereditary

• Highlighting the hereditary nature of the condition can help your family understand their risk for hATTR amyloidosis and why your condition may directly affect them

Describe the variability in symptoms

• Help your family understand that hATTR amyloidosis can affect several parts of the body, including the nerves, heart, and digestive system. Symptoms may vary widely from patient to patient, even among individuals in the same family, though some patients do see a pattern develop

Explain that misdiagnosis is common

• hATTR amyloidosis symptoms are similar to those of other conditions. Knowing what to look for can help family members work with doctors to receive an accurate diagnosis

Encourage communication

• Urge your family members to speak with their doctors about genetic counselling and testing. If you feel comfortable, you may want to share your own journey to diagnosis with them

By encouraging your family to visit a doctor and genetic counsellor, you can help them learn more about the condition. They may talk about their chances of inheriting it, how testing works, and what may happen after a diagnosis.