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A MyAmyloidosisTeam Member asked a question 💭
Paris, AR
September 5
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A MyAmyloidosisTeam Member

Bill
It’s my understanding lots of factors need to be considered when answering your question. I encourage you to talk to your doctor who is knowledgeable in your treatment plan. The newer medications are very promising so I suggest focusing on living every day like there is no tomorrow versus listening to an AI response to a question. I hope you have a blessed day!

September 7
A MyAmyloidosisTeam Member

Just realize that Median and Mean could indicate a wide span including long and shorter people in the group that is measured. I started noticing and complaining to my cardiologists in 2018 and it took until 2023 to get an "official " diagnosis after many searches and tests to find out what was wrong eventually. There are lots of reasons it took that long. Some were due to wait times for appointments, tests, and results. Location and quality of care impacts it as well. Did the researchers start the calendar at 2018 or 2023 in my case I don't know? People could be walking around with wt ATTR-CM unknowingly, uncomplaining about how they feel. Thinking that it was just that they were getting "old". Which is true but not always the cause of how they feel.

September 9
MyAmyloidosisTeam

Great question! Life expectancy is looked at similarly for both types — but the outcomes can differ quite a bit.

For wild-type ATTR (ATTRwt), the median survival after diagnosis is around 3.5 years. However, because ATTRwt tends to develop more slowly, the overall prognosis is generally considered more favorable than Show Full Answer

Great question! Life expectancy is looked at similarly for both types — but the outcomes can differ quite a bit.

For wild-type ATTR (ATTRwt), the median survival after diagnosis is around 3.5 years. However, because ATTRwt tends to develop more slowly, the overall prognosis is generally considered more favorable than hATTR. For hATTR, studies from the past 15 years show a median survival of about 4.7 years without treatment — though this varies based on:

- The specific genetic mutation involved
- Age at diagnosis
- Whether the heart is affected (cardiomyopathy)

The good news is that newer treatments are improving survival for both types significantly, with some people living well over a decade after diagnosis. 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."*

It's always worth discussing your specific situation with your care team, as individual factors play a big role in outlook.

September 5

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