Hello, my name is Anne Marie Carr, Founder and Executive Director of Hereditary Amyloidosis Canada and I am living with hATTR amyloidosis. I’m 61 years old and I currently live in Ancaster, Ontario with my husband Mervyn. I am a mother of one son and a grandmother to my six year old granddaughter.
Like many of you, I struggled for a diagnosis. Initially my symptoms, such as breathing problems, were considered asthmatic caused by environmental factors. My chronic weight-loss and diarrhea were attributed to viruses which were going around at the time. I remember getting the sensation of pins and needles in my finger tips and I found it difficult to open a bottle of water or do up buttons on clothing. Eventually, I was diagnosed with hATTR amyloidosis in September 2015.
To all of the other hATTR patients are out there, I know there are days when you may feel alone and the symptoms are too much to bear. But you are NOT alone. Watch the video below to learn more about my story.
Learn what patients and their supporters have to say about living with with Hereditary (hATTR) amyloidosis.
hATTR amyloidosis is estimated to affect 50,000 people worldwide, with more than 130 different TTR gene mutations identified.
hATTR amyloidosis runs in families – A person only needs to inherit one copy of the affected gene from one parent in order to develop hATTR amyloidosis.
It can often take more than 4 years and visits with 5 or more doctors across different specialties to receive an accurate diagnosis of hATTR amyloidosis.
New therapies that address the underlying cause of hATTR amyloidosis are providing hope for people living with the disease.
The Amyloidosis Foundation is working to increase awareness of all forms of amyloidosis, declaring March as Amyloidosis Awareness Month. To learn more, or to get involved, please visit the website.
Akcea and Ionis Announce Approval of Tegsedi (inotersen injection) in Canada. To learn more, please visit the website.
FDA Approves Alnylam’s Onpattro for Polyneuropathy of hATTR Amyloidosis. To learn more, please visit the website.
Akcea and Ambry Genetics to Launch hATTR Compass, a Genetic Testing Program for Patients with Suspected Hereditary ATTR Amyloidosis. To learn more, please visit the website.
A report on treatments for hereditary transthyretin-related (hATTR) amyloidosis by the Institute for Clinical and Economic Review (ICER) was reviewed by the Midwest Comparative Effectiveness Public Advisory Council (Midwest CEPAC) at the ICER meeting held in Chicago...
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