Hear from people living with hATTR amyloidosis



Downloadable Resources

A Closer Look at hATTR Amyloidosis
Tips for starting the conversation with your family and a list of resources for further education

Family Health Tree
A tool to help patients map their family’s history of hATTR amyloidosis, including symptom tracking, diagnosis time, and more

Discussion Guide
If you think you may be experiencing symptoms of hATTR amyloidosis, the first step is to have a discussion with your doctor. Bring this discussion guide to your next GP or specialist appointment – it covers everything you need to have an informed discussion with your doctor about hATTR.

Why take the assessment?

hATTR amyloidosis is a rare disease but its symptoms are often similar to those of other conditions, leading to potential delays in diagnosis. Timing is critical because the sooner you are diagnosed, the sooner you could get access to treatment. The good news is, genetic testing can determine if you have the condition.

Are you at risk? Use this simple assessment tool to help guide your discussion with your doctor. It only takes 1 – 2 minutes to complete.

Question 1 of 12

Do you suffer regularly from shortness of breath and/or wake up in the middle of the night unable to breath?

Question 2 of 12

Do you have swelling (fluid retention) in your legs or other areas (waist, hands) regularly?

Question 3 of 12

Do you regularly experience abdominal (stomach) pain, constipation, diarrhea/loose or watery bowel movements?

Question 4 of 12

Are you regularly unable to differentiate hot from cold (for example, when getting in the shower or bath)?

Question 5 of 12

Do you regularly feel numbness, tingling, burning or prickling sensation in the hands or feet, and/or diagnosed with neuropathy?

Question 6 of 12

Do you regularly have difficulty with balance (for example, in the shower or at night-time or other times) or require aid to walk and/or move around, or feel faint?

Question 7 of 12

Have you experienced unintentional weight loss?

Question 8 of 12

Do you have a history of heart failure, irregular or racing heartbeat, and/or a pacemaker?

Question 9 of 12

Do you have a history of carpal tunnel syndrome?

Question 10 of 12

Do you have, or have you ever had spinal stenosis (lumbar, cervical or other)?

Question 11 of 12

Do you have a family history of amyloidosis, heart disease, or a thick heart?

Question 12 of 12

What is your family heritage or background?


Thank you for completing the assessment

Based on your family history and your symptoms you may be at risk for hereditary amyloidosis (hATTR). Talk to your doctor about your risk and whether genetic testing is right for you and your family. In Canada, there are programs that make genetic tests available free of charge for people who may carry the hATTR amyloidosis gene.


Find out more…

Hear from people living with hATTR amyloidosis