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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Why is the condition not well known in UK??

A MyAmyloidosisTeam Member asked a question 💭
London england
October 8
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Blood Tests for Amyloidosis: What Can They Tell Us? Read Article...
A MyAmyloidosisTeam Member

It is not at all a rare disease if you are referring to wild-type amyloidosis. AL amyloidosis is quite rare. hATTR/vATTR (same thing) which is also known as Familial ATTR, is somewhat rare.

What is rare are competent doctors who don't follow your AI generated semi-misinformation. Doctors dogma belief that Wild-type amyloidosis is rare, leads to premature deaths and not diagnosing the disease prior to more serious progression. Once there is too much amyloid fibril deposition in your heart wall or elsewhere in yoyr body, the damage is irreversible and permanent.

October 8
MyAmyloidosisTeam

Amyloidosis isn't well known in the UK (or anywhere, really) for a few key reasons. It's a rare condition, and even many medical professionals have limited awareness of it — which sadly leads to delayed diagnoses and missed cases.

Globally, it takes an average of around four years for someone to be diagnosed with Show Full Answer

Amyloidosis isn't well known in the UK (or anywhere, really) for a few key reasons. It's a rare condition, and even many medical professionals have limited awareness of it — which sadly leads to delayed diagnoses and missed cases.

Globally, it takes an average of around four years for someone to be diagnosed with amyloidosis. That's a long time to be searching for answers!

Some of the main reasons it stays under the radar include:

- It's relatively rare, so fewer people have heard of it
- Symptoms can overlap with other conditions, making it harder to identify
- The misfolded proteins causing harm inside the body aren't visible, making it feel like an "invisible illness"
- There has historically been limited public health campaigns focused on it

As one MyAmyloidosisTeam member put it, there needs to be more awareness, better treatment options, and improved approaches from healthcare providers.

The good news is that awareness is growing. World Amyloidosis Day on October 26th each year, organised by the Amyloidosis Alliance, brings together people from across the globe — including the UK — to help change this. Sharing your own story can also make a real difference in spreading the word locally.

October 8

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