Start the hATTR amyloidosis conversation with your doctor

If you suspect you might be at risk for hereditary ATTR (hATTR) amyloidosis, it’s important that you talk to your doctor. Here are some tips to prepare for the conversation:

Find out about your family history

Gathering your family’s healthcare records and compiling your family’s medical history can give your doctor important information that can help with the diagnosis of hATTR amyloidosis.

Download our Family health tree tool, which can help you keep track of your family history and make it easier to discuss with your doctor.

Prepare a list of symptoms

Symptoms of hATTR amyloidosis can affect many parts of the body and can often be mistaken for other conditions, so it’s important to be aware of the various symptoms that may be a sign of hATTR amyloidosis.

It’s important that you discuss all your symptoms because your doctor may choose to refer you to a specialist who could recommend further tests to help make a diagnosis.

Genetic counselling

If your doctor believes you are at risk for hATTR amyloidosis, they may recommend you work with a genetic counselor.

Why is it important?

Genetic counselling can help you understand your chances of developing the condition as well as familiarize you with the testing process and implications of a diagnosis. Genetic counsellors can also help you understand the issues related to genetic testing—from personal risk to possible insurance impact—and can help you determine if a genetic test may be right for you.

What information does it provide?

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.

“It’s important that patients have access to screening and genetic testing.”

Tootie Bueser, Cardiac Genetic Nurse
Hear a Cardiac Genetic Nurse's Talk About the Importance of Genetic Testing