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 Facts
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.
Latest Updates
2nd European Meeting for ATTR Amyloidosis for Doctors and Patients – September 1-3, 2019
The 2nd European Meeting for ATTR Amyloidosis for Doctors and Patients took place in Berlin, Germany. In attendance were 300 participants, including over 200 doctors from 21 countries across the globe. Patients and caregivers came from Japan, South Korea, Venezuela,...
2019 Biennial ATTR (Familial) Meeting
From October 25-27, 2019, I was able to attend this meeting in Chicago, arranged by Amyloidosis Support Groups. The goal of the conference was to inform and share information about amyloidosis, current and future treatments, clinical trials and research updates....
November 16 webinar recording now available!
Thank you to all who were able to join us on November 16 for the Unfolding hATTR: Cardiac Amyloidosis presentation with Dr. Diego Delgado. In case you missed it, you can listen to a recording of the webinar here: If you have any future webinar topic...
NOVEMBER 16 WEBINAR – You’re Invited!
Unfolding hATTR: Update on Cardiac Amyloidosis Are you or a loved one living with hereditary ATTR (hATTR) amyloidosis? On behalf of Hereditary Amyloidosis Canada, we’d like to invite you to our first webinar for Canadian patients, caregivers and family members to help...
Onpattro® (patisiran) is now approved in Canada
Alnylam Pharmaceuticals, Inc. Announce Health Canada’s Approval of Onpattro® (patisiran) for the treatment of polyneuropathy in adult patients with hereditary transthyretin-mediated (hATTR) amyloidosis. To learn more, please...
United Kingdom endorses the use of inotersen (Tegsedi) to treat patients with hATTR
On April 16, 2019 the National Institute for Health and Care Excellence (NICE) releases its final guidance recommending inotersen (Tegsedi) be placed on England’s National Health Service for the treatment of nerve damage from hereditary transthyretin-mediated...
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