{"id":473,"date":"2021-05-25T14:30:45","date_gmt":"2021-05-25T12:30:45","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/events\/world-amyloidosis-day\/testimonials\/my-story\/"},"modified":"2021-05-25T14:30:45","modified_gmt":"2021-05-25T12:30:45","slug":"my-story","status":"publish","type":"aa_testimony","link":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/my-story\/","title":{"rendered":"My Story"},"content":{"rendered":"<p class=\"wp-block-paragraph\">My beautiful mummy lost her fight from Amyloidosis on 27\/11\/2019. We as a family got her diagnosis 12 weeks before she died.<\/p>\n<p class=\"wp-block-paragraph\">We hadn\u2019t even heard of this illness before hand, shortly after mummy\u2019s death I started to feel unwell it started with really sore buttocks to the point I thought something wrong with my couch so I replaced it but nothing changed.<\/p>\n<p class=\"wp-block-paragraph\">Then diarrhoea &amp; constipation, felt like a haze or fog had come over me, was 51 &amp; was always active walking &amp; taking big strides but everything changed\u2026 I was walking like an old woman really slow, I had no energy, going upstairs on my hands &amp; knees, out of breath, walking across the room holding onto furniture &amp; door frames because my balance was so poor.<br \/>I was admitted to hospital &amp; told my heart was working twice as hard as it should have being, burning hands &amp; feet, swollen tongue, hands, legs &amp; feet, really tired but can\u2019t sleep, waking up every hour, have no quality of life.<br \/>I meet a friend I hadn\u2019t seen in a while &amp; she was taking aback by how my appearance had changed so much<\/p>\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>I meet a friend I hadn\u2019t seen in a while &amp; she was taking aback by how my appearance had changed so much.<\/p>\n<\/blockquote>\n<p class=\"wp-block-paragraph\">I can\u2019t explain myself some days, I know in my head what I want to say but can\u2019t find the words to say it. I\u2019m constantly in pain from the base of my scull right across my shoulders &amp; the bottom of my spine, my arms &amp; legs fell like tree trunks so heavy.<br \/>I\u2019ve been feeling so unwell from 2019 &amp; feel like I\u2019ve been banging my head off a brick wall talking to my doctor, changed my doctor &amp; told him I felt like no one in the surgery was listening to me &amp; he listened, he has referred me to royal free hospital in London.<br \/>I am so thankful to him as my mother attended the same surgery &amp; for 20 years she knew something wasn\u2019t right with her health, my gp told me mummy had cerebral amyloid angiopathy &amp; proceeded to tell me this wasn\u2019t the same as Amyloidosis. I\u2019ve been talking to different Doctors &amp; Nurses that have never heard tell of this illness, we as a family are the same but not medical trained so we have an excuse but not the medical profession.<\/p>\n<p class=\"wp-block-paragraph\">I really hope my children &amp; grandchildren have a better experience to diagnosis than I have or centenary better than my beautiful mummy had, wishing all who have this awful illness.<br \/>The very best Xx<\/p>\n<p class=\"wp-block-paragraph\">My story &#8211; Grania &#8211; IRELAND (Republic)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>We hadn\u2019t even heard of this illness before hand, shortly after mummy\u2019s death I started to feel unwell it started with really sore buttocks to the point I thought something wrong with my couch so I replaced it but nothing changed.<\/p>\n","protected":false},"featured_media":1196,"template":"","class_list":["post-473","aa_testimony","type-aa_testimony","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - 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