Do you know the signs of amyloidosis? When Anne Marie Carr was diagnosed with Amyloidosis in 2015, she was told most patients only survive three years. Six years later, she's advocating for others. — via healthing_ca Amyloidosis Healthing Odjick .
that 50,000 people have hereditary amyloidosis. Because of the rare nature of this condition, it is difficult for most patients to get a proper diagnosis.
What goes through your head when you’re telling your doctor — for five, six years — that something’s wrong and you’re not getting a diagnosis? So, of course, I went on the internet and it was shock after shock after shock because, basically, amyloidosis was a death sentence. When I asked the specialist that I eventually contacted, he basically said to me life expectancy is normally a year and a half to three years. That was six years ago, so I’m past my expiry date, if you will.
And then there’s going to the bathroom. You know how you know when you have to go because you get sensations in those regions, right? I don’t get those sensations. Often what can happen is that I go from a sitting position to standing, and it’s like gravity’s taken over and I’ve got a good two seconds to make it to the bathroom. You can imagine if I don’t get there quickly enough — accident after accident.
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