Rosaline is a patient from Ireland with hereditary ATTR Amyloidosis and tells her story. She is the founder of the All Ireland ATTR Amyloidosis Awareness Group.
thank you for all of your work - not an easy thing to do when you’re feeling poorly. amyloidosis is one of several diagnoses that my doctors and i have considered. i’m now being tested for something else. it’s an incredible shame that so many doctors put our symptoms down to a psychosomatic etiology. most doctors are not the gods that they think they are, but there are wonderful ones who treat us as knowledgeable, honest, searching people, and try hard to find out what’s going on. anyone who has an illness that can’t be figured out, please google like crazy, but do it wisely (through foundations, academic centers, appropriate journals), and fire the doctors who treat you with disdain.
I just found out I have a pathogenic TTR gene. I've been having all sorts of problems that have been progressing over the last 2 years. I've been told I was psychosomatic. I knew my bladder was changing as of 7 years ago. I've spent years going to specialists to find out what was wrong with my hands. My heart started changing (thickening in areas) and I had progressively worsening palpitations. My autonomic nervous system has been affected and I developed low blood pressure and get dizzy upon standing. I was told that I was just anxious. I am too exhausted to work or even take a shower regularly. Sometimes, it feels like I'm on a different planet with stronger gravity. I used to be very active with water sports and could do flips on the water while kitesurfing. I would do anything to feel like that again but I have doctors telling me that I'm imagining things and "missing out on the best years" of my life, as if I am choosing to go to doctors to complain about nothing instead of being out having fun. I got so fed up and desperate that I ordered whole genome sequencing. I just found out about my TTR gene yesterday and am researching now. Thank you for sharing this video. It has made a difference for me. I'm in the USA but I'm 1/3 Irish according to my genetic ancestry reports.
Thankyou for sharing
thank you for all of your work - not an easy thing to do when you’re feeling poorly. amyloidosis is one of several diagnoses that my doctors and i have considered. i’m now being tested for something else. it’s an incredible shame that so many doctors put our symptoms down to a psychosomatic etiology. most doctors are not the gods that they think they are, but there are wonderful ones who treat us as knowledgeable, honest, searching people, and try hard to find out what’s going on. anyone who has an illness that can’t be figured out, please google like crazy, but do it wisely (through foundations, academic centers, appropriate journals), and fire the doctors who treat you with disdain.
I just found out I have a pathogenic TTR gene. I've been having all sorts of problems that have been progressing over the last 2 years. I've been told I was psychosomatic. I knew my bladder was changing as of 7 years ago. I've spent years going to specialists to find out what was wrong with my hands. My heart started changing (thickening in areas) and I had progressively worsening palpitations. My autonomic nervous system has been affected and I developed low blood pressure and get dizzy upon standing. I was told that I was just anxious. I am too exhausted to work or even take a shower regularly. Sometimes, it feels like I'm on a different planet with stronger gravity. I used to be very active with water sports and could do flips on the water while kitesurfing. I would do anything to feel like that again but I have doctors telling me that I'm imagining things and "missing out on the best years" of my life, as if I am choosing to go to doctors to complain about nothing instead of being out having fun. I got so fed up and desperate that I ordered whole genome sequencing. I just found out about my TTR gene yesterday and am researching now. Thank you for sharing this video. It has made a difference for me. I'm in the USA but I'm 1/3 Irish according to my genetic ancestry reports.