{"id":8098,"date":"2023-02-23T10:27:41","date_gmt":"2023-02-23T10:27:41","guid":{"rendered":"https:\/\/www.healthnews.ie\/?p=8098"},"modified":"2023-02-28T11:09:45","modified_gmt":"2023-02-28T11:09:45","slug":"dont-live-with-the-pain-and-discomfort-how-to-manage-attr-amyloidosis","status":"publish","type":"post","link":"https:\/\/www.healthnews.ie\/rare-diseases\/dont-live-with-the-pain-and-discomfort-how-to-manage-attr-amyloidosis\/","title":{"rendered":"Don&#8217;t live with the pain and discomfort: how to manage ATTR amyloidosis"},"content":{"rendered":"\n<div style=\"background-color:#f2f2f2;color:#32373c\" class=\"wp-block-atomic-blocks-ab-profile-box round ab-has-avatar ab-font-size-14 ab-block-profile ab-profile-columns\"><div class=\"ab-profile-column ab-profile-avatar-wrap\"><div class=\"ab-profile-image-wrap\"><figure class=\"ab-profile-image-square\"><img loading=\"lazy\" decoding=\"async\" width=\"250\" height=\"250\" class=\"ab-profile-avatar wp-image-8099\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2023\/02\/07210452\/Screenshot_20230131_144936_Gallery.png\" alt=\"\" srcset=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2023\/02\/07210452\/Screenshot_20230131_144936_Gallery.png 250w, https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2023\/02\/07210452\/Screenshot_20230131_144936_Gallery-125x125.png 125w\" sizes=\"auto, (max-width: 250px) 100vw, 250px\" \/><\/figure><\/div><\/div><div class=\"ab-profile-column ab-profile-content-wrap\"><h2 class=\"ab-profile-name\" style=\"color:#32373c\">John Wilson<\/h2><p class=\"ab-profile-title\" style=\"color:#32373c\">Amyloidosis Patient<\/p><div class=\"ab-profile-text\"><\/div><ul class=\"ab-social-links\"><\/ul><\/div><\/div>\n\n\n\n<p><em>It\u2019s important to educate people about ATTR amyloidosis because the symptoms are not always obvious.<\/em><\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\n<p>I\u2019d never heard of amyloidosis until 2020 \u2014 I became unwell at work. I initially thought I was having a heart attack.<strong><\/strong><\/p>\n\n\n\n<p>In August 2020, I met with my consultant who informed me of the diagnosis. To determine what type I had, I went through several blood tests, and this included genetic testing. We waited up to nearly 10 weeks for the genetic blood results which confirmed I had the hereditary type.<\/p>\n\n\n<div id=\"healt-1275109311\"><div class=\"healt-adlabel\">Advertisements<\/div><div id=\"healt-2877445445\" style=\"margin-top: 30px;margin-bottom: 30px;margin-left: auto;margin-right: auto;text-align: center;\"><a data-no-instant=\"1\" href=\"http:\/\/www.yourheartsmessage.ie\/\" rel=\"noopener\" class=\"a2t-link\" target=\"_blank\" aria-label=\"2472_Vyndaqel_YHM_DigitalAds_750X250_AUG22_Optimised2\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2023\/02\/07210449\/2472_Vyndaqel_YHM_DigitalAds_750X250_AUG22_Optimised2.gif\" alt=\"\"  width=\"750\" height=\"250\"  style=\"display: inline-block;\" \/><\/a><\/div><\/div>\n\n\n<h2 class=\"wp-block-heading\"><strong>Watch out for symptoms<\/strong><\/h2>\n\n\n\n<p>In November 2020, I was referred to Dr Emer Joyce, a cardiologist with a special interest in amyloidosis. I met with Dr Joyce who confirmed I had amyloidosis which was affecting my heart, joints and nerves.<\/p>\n\n\n\n<p>It was at this point we realised that I had symptoms for a lengthy period of time which included severe joint pain in hips, shoulder and feet, reduced feeling from the knees down, tiredness, weight loss and shortness of breath on occasion.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\"><p><meta charset=\"utf-8\">My blood work was improved immensely, and the treatment improved my quality of life.<\/p><\/blockquote>\n\n\n\n<p>Understanding the symptoms of this condition is important. People may look at me and say &#8220;he looks great&#8221; when they have no idea that it took me 20 minutes to put my socks on this morning or that I had to stop what I was doing to catch my breath.<\/p>\n\n\n<script type=\"text\/plain\" data-tcf=\"waiting-for-consent\" data-id=\"8260\" data-bid=\"94\" data-no-track=\"impressions\">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<\/script>\n\n\n<h2 class=\"wp-block-heading\" id=\"h-better-life-with-treatment\"><strong>Better life with treatment<\/strong><\/h2>\n\n\n\n<p>After several months of information-gathering, doctors visits and cocktails of tablets later, in May 2021, I was told that The National Amyloidosis Centre had advised I may be suitable for a drug trial taking place mid 2021 that involved gene editing. I went over in June for assessments to see whether I was a suitable candidate, and to our disbelief, I was. I went in for review every month, then visits became more spread out.<\/p>\n\n\n\n<p>My blood work was improved immensely, and the treatment improved my quality of life. I continue on medication for my heart and the neuropathy (pains). The symptoms vary at times and can be worse or better. I have improved feeling in my legs and feet now, too.<\/p>\n\n\n\n<div style=\"color:#32373c;background-color:#2db5df\" class=\"wp-block-atomic-blocks-ab-notice ab-font-size-16 ab-block-notice\" data-id=\"5e5432\"><div class=\"ab-notice-text\" style=\"border-color:#2db5df\"><p>If you are a patient, family member or caregiver and in search of support, you can join the ATTR Amyloidosis All Ireland Support Group on Facebook, visit their website or send them an email, and an advocate will be in contact with you.<br\/>Patients\u2019 Support Group<br\/>(Facebook) ATTR Amyloidosis All Ireland Support Group<br\/>Website: <a href=\"http:\/\/Amy.ie\" target=\"_blank\" rel=\"noreferrer noopener\">Amy.ie<\/a><br\/>Email: <a href=\"mailto:info@amy.ie\" target=\"_blank\" rel=\"noreferrer noopener\">info@amy.ie<\/a><\/p><\/div><\/div>\n\n\n<div id=\"healt-3305949582\"><div class=\"healt-adlabel\">Advertisements<\/div><div id=\"healt-1200777162\" style=\"margin-top: 30px;margin-bottom: 30px;margin-left: auto;margin-right: auto;text-align: center;\"><a data-no-instant=\"1\" href=\"http:\/\/www.yourheartsmessage.ie\/\" rel=\"noopener\" class=\"a2t-link\" target=\"_blank\" aria-label=\"2472_Vyndaqel_YHM_DigitalAds_750X250_AUG22_Optimised2\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2023\/02\/07210449\/2472_Vyndaqel_YHM_DigitalAds_750X250_AUG22_Optimised2.gif\" alt=\"\"  width=\"750\" height=\"250\"  style=\"display: inline-block;\" \/><\/a><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>It\u2019s important to educate people about ATTR amyloidosis because the symptoms are not always obvious. I\u2019d never heard of amyloidosis until 2020 \u2014 I became unwell at work. I initially thought I was having a heart attack. In August 2020, I met with my consultant who informed me of the diagnosis. To determine what type &hellip; <a href=\"https:\/\/www.healthnews.ie\/rare-diseases\/dont-live-with-the-pain-and-discomfort-how-to-manage-attr-amyloidosis\/\">Continued<\/a><\/p>\n","protected":false},"author":108,"featured_media":8101,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[5778],"tags":[5779],"class_list":["post-8098","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases","tag-rare-diseases-q1-2023"],"acf":[],"featured_image_src":"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2023\/02\/07210451\/GettyImages-985524096-600x400.png","featured_image_src_square":"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2023\/02\/07210451\/GettyImages-985524096-600x600.png","author_info":{"display_name":"Carolina Galbraith Duarte","author_link":"https:\/\/www.healthnews.ie\/author\/carolinagalbraithduarte\/"},"vicky_index_order":"","_links":{"self":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts\/8098","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/users\/108"}],"replies":[{"embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/comments?post=8098"}],"version-history":[{"count":8,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts\/8098\/revisions"}],"predecessor-version":[{"id":8271,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts\/8098\/revisions\/8271"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/media\/8101"}],"wp:attachment":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/media?parent=8098"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/categories?post=8098"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/tags?post=8098"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}