What is the life expectancy and prognosis for ATTR-CM amyloidosis?
The prognosis for ATTR-CM (transthyretin amyloid cardiomyopathy) depends on several factors, including the type of ATTR (hereditary or wild-type), which gene mutation is involved, how early it was diagnosed, and how much amyloid has built up in the heart.
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What is the life expectancy and prognosis for ATTR-CM amyloidosis?
The prognosis for ATTR-CM (transthyretin amyloid cardiomyopathy) depends on several factors, including the type of ATTR (hereditary or wild-type), which gene mutation is involved, how early it was diagnosed, and how much amyloid has built up in the heart.
Here's a general overview:
- hATTR-CM with Val122Ile mutation (more common in people of African ancestry): average survival is around 2.5 years
- hATTR amyloidosis overall: people live an average of 7 to 12 years after diagnosis
- Untreated hATTR amyloidosis: median survival has historically been around 4.7 years
- Wild-type ATTR-CM: tends to have a more favorable prognosis, as it progresses more slowly and is usually diagnosed in men over 60 The good news is that the outlook is improving significantly. Newer treatments are helping people live well beyond a decade after diagnosis. For example, tafamidis has shown strong results — people diagnosed before age 50 were 91% less likely to die during study periods compared to those untreated, and those diagnosed at 50 or older had an 82% lower risk of death with treatment.
Several factors influence prognosis:
- Stage at diagnosis — earlier stages are linked to longer survival
- Which organs are affected — heart involvement is one of the biggest predictors
- Gene mutation type — some mutations respond better to specific treatments
- Age at diagnosis — earlier diagnosis generally leads to better outcomes
- Lifestyle factors — a heart-healthy, low-sodium diet is recommended for those with heart involvement As one MyAmyloidosisTeam member put it: *"All of us don't know our life expectancy with this disease. The only thing we can do is live our lives to the fullest."*
Working closely with a specialist to start treatment early and monitor organ function can make a real difference. The landscape for managing this condition continues to improve with ongoing research and new therapies.
July 30
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