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 the Family Health Tree tool to 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.

Keep track of your symptoms using the Symptoms Checklist & Tracker tool and discuss them with your doctor during your next visit.

It may be helpful to bring the Doctor Fact Sheet with you, to help with your discussion about 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.

Find a doctor

Our hATTR Amyloidosis Physician Directory can help you find a doctor experienced in managing patients with hATTR amyloidosis.

Find an hATTR amyloidosis physician »

“Working with my
healthcare team helped me determine the best next steps.”

CECE, living with hATTR amyloidosis

Genetic counseling and testing

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

Why is it important?

Genetic counselors can help you and your family understand your chances of developing the condition as well as familiarize you with the testing process and implications of a diagnosis. Genetic counselors 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 transthyretin (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.