{"id":437,"date":"2021-06-21T08:35:47","date_gmt":"2021-06-21T06:35:47","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/events\/world-amyloidosis-day\/testimonials\/my-life-with-amyloidosis\/"},"modified":"2021-06-21T08:35:47","modified_gmt":"2021-06-21T06:35:47","slug":"my-life-with-amyloidosis","status":"publish","type":"aa_testimony","link":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/my-life-with-amyloidosis\/","title":{"rendered":"My life with amyloidosis"},"content":{"rendered":"<p class=\"wp-block-paragraph\">My name is Vitor Ferreira, I&rsquo;m 52 years old and I&rsquo;ve had symptoms of this mutation since I was 39 years old. When I learned that I had the disease, despite knowing that there was a possibility of having it, as I saw my father suffer a lot and gradually weaken, I was paralyzed, in shock, as if at that moment, a death sentence had been issued that would occur in soon in my life. After a few days of great sadness and bitterness, knowing that even unintentionally I could have passed this disease on to my children, I had to get up and go back to living and look for a treatment or a solution in every way possible at the time, even if temporary, to have a life without any physical weakness.Well, I tried the transplant, but I didn&rsquo;t have the courage at the time of roll call, because when they call you, a movie plays in our heads and I just thought about not having the opportunity to be alive with MY CHILDREN, who are EVERYTHING to me . So I looked with the help of Dr. Teresa la from Portugal who referred me to a doctor here in Brazil who was and still is a reference in the study of paramyloidosis as a palliative treatment, but the difficulty of getting medicines at the time was too great, I spent more than a year to start receiving the drug and when provided it did not come monthly, sometimes it was missing, which led me to look for a study that was available at the time, and I was able to enter the study of the drug, which today is a drug with greater efficacy and what keep me alive.In the middle of this walk I have already developed some weaknesses, such as Atrioventricular Block, requiring the use of a pacemaker, neurogenic bladder, making permanent use of a urinary catheter, I have difficulties in walking, but I am very grateful to the doctors and laboratories who were and are committed to the fight for cure of this evil. And I say with all my heart: There is no effective medication, if there is not also psychological support with the patient, because we have passed at a certain point of this disease, from self-employed people to dependents. and the family, the medical team is essential at these times. But I tell everyone who may be reading it. NEVER GIVE UP, BECAUSE OUR ANXIETY TO LIVE AND WANT TO BE WELL, TOGETHER WITH THE TREATMENTS AVAILABLE TODAY, MAKE US HAVE A MORE DIGNIFIED LIFE THAN OUR ANCESTORS HAD. ALWAYS HAVE A LOT OF STRENGTH. Note: This one next to me in the photo, is my son, and unfortunately of 5 children he is the one with the mutation. Sorry my son, I LOVE YOU And I have great hope that you will soon have a much better treatment than we have today, or even a genetic repair so that everyone who has this mutation will never live with this disease again\u2026<\/p>\n<p class=\"wp-block-paragraph\"><a href=\"Amyloidosis: Our family's curse\">My life with amyloidosis<\/a> &#8211; Vitor &#8211; Brazil<\/p>\n","protected":false},"excerpt":{"rendered":"<p>My name is Vitor Ferreira, I\u2019m 52 years old and I\u2019ve had symptoms of this mutation since I was 39 years old.<\/p>\n","protected":false},"featured_media":438,"template":"","class_list":["post-437","aa_testimony","type-aa_testimony","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>My life with amyloidosis - Amyloidosis Alliance<\/title>\n<meta name=\"description\" content=\"My name is Vitor Ferreira, I\u2019m 52 years old and I\u2019ve had symptoms of this mutation since I was 39 years old.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/my-life-with-amyloidosis\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"My life with amyloidosis - 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