- If you or someone close to you is having tests for or has been diagnosed with ATTR-CM, you may have many questions and will want to find reliable information.
- In this section, you will find a list of suggested questions to ask your doctor, links to stories from other people who are living with ATTR-CM, as well as links to organisations that can provide you with more information and support.
What should I ask my doctor about ATTR-CM?
To better understand ATTR-CM, your treatment plan and what to expect, it can be helpful to have a list of questions ready to ask your doctor.
Here are some suggested questions to help get you started:
- Based on my symptoms, medical history and family history, do you think ATTR-CM could be the cause of my heart failure?
- How quickly could this condition progress?
- Do I need additional tests to confirm my diagnosis?
- Can I have scintigraphy rather than a biopsy?
- Will the results of my test impact my treatment plan?
- Could you recommend any groups or organisations that can provide support or additional information on ATTR-CM?
PATIENT & CARER PERSPECTIVES
The below videos represent real experiences from people diagnosed with ATTR-CM. Click each video to learn about their individual journeys, from spotting early signs to achieving a diagnosis, and what to expect when caring for someone living with ATTR-CM.
The road to diagnosis
(wild-type ATTR-CM)
An early diagnosis
(wild-type ATTR-CM)
Spotting the signs
(wild-type ATTR-CM)
Being a carer
Living with hereditary ATTR-CM
ATTR-CM support organisations
Support organisations can be like a lifeline when you are living with ATTR-CM - providing information, services and linking you with support groups and other people who are living with amyloidosis.
Australian Amyloidosis Network
Australian Amyloidosis Network (AAN) is a group of medical amyloidosis centres involving different specialties, dedicated to the diagnosis and management of Australian people living with all types of amyloidosis.
Rare Voices Australia
Rare Voices Australia (RVA) is Australia’s peak organisation advocating for Australians living with rare disease to promote diagnosis, access to treatments and coordinated care.
Leukaemia Foundation
The Leukaemia Foundation offers programs, support, and information on amyloidosis. Learn about your condition and get answers to questions about services on offer.
