{"id":652,"date":"2024-09-10T15:00:00","date_gmt":"2024-09-10T18:00:00","guid":{"rendered":"https:\/\/biakaorimi.com\/?p=652"},"modified":"2026-06-24T03:05:19","modified_gmt":"2026-06-24T06:05:19","slug":"my-fdmas-story","status":"publish","type":"post","link":"https:\/\/biakaorimi.com\/en\/en\/my-fdmas-story\/","title":{"rendered":"My history with FD\/MAS: How I became a patient advocate for two rare chronic diseases"},"content":{"rendered":"<p>Hi! I\u2019m Beatriz Kaori Miyakoshi Lopes, and today I\u2019d like to share a bit of my experience with FD\/MAS &#8211; what was the diagnosis like, my life and challenges and much more. What an odyssey this was!<\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Faces of FD\/MAS - Beatriz&#039;s Story\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/Sk_UaHpopg4?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p>This article was written by me for and published the first time by the FD\/MAS Alliance in the US. Here I share my experiences, personal history with these two rare diseases and how I became a patient advocate for the American NGO.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><a href=\"https:\/\/fdmasalliance.org\/meet-beatriz-part-1-of-3\/\" target=\"_blank\" rel=\"noreferrer noopener\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"395\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Site-My-Articles-1024x395.png\" alt=\"\" class=\"wp-image-392\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Site-My-Articles-1024x395.png 1024w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Site-My-Articles-300x116.png 300w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Site-My-Articles-768x297.png 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Site-My-Articles-1536x593.png 1536w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Site-My-Articles-2048x791.png 2048w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Site-My-Articles-18x7.png 18w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\">How it all began<\/h3>\n\n\n\n<p>My history with these two very rare and chronic conditions started before I was born \u2013 except I didn\u2019t know about it yet and neither did my parents!&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"O que \u00e9 FD\/MAS? Tem cura?\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/2l_qdp5orOI?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p>As with all people with either FD (fibrous dysplasia, a bone disease) or MAS (McCune-Albright Syndrome, that includes the bones, endocrine system and skin), you\u2019re just born that way \u2013 but where it happens, how it affects your life and even when you find out varies greatly from person to person.&nbsp;<a href=\"https:\/\/fdmasalliance.org\/about\/fd-mas-101\/\" target=\"_blank\" rel=\"noreferrer noopener\">here<\/a>.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"680\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240123_19343593-1024x680.jpg\" alt=\"\" class=\"wp-image-366\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240123_19343593-1024x680.jpg 1024w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240123_19343593-300x199.jpg 300w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240123_19343593-768x510.jpg 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240123_19343593-1536x1019.jpg 1536w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240123_19343593-2048x1359.jpg 2048w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240123_19343593-18x12.jpg 18w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>In my case, the first signs showed up when I was around 1 year old in 1995. I took longer to walk for a toddler and once I did, I fell down a lot. Now, most toddlers fall and you\u2019d expect them to cry a bit, but eventually to pick themselves up and keep walking, right? But in my case, I just kept crying and didn\u2019t move. My parents took me to the hospital and via the X-Rays they found out that not only did I have a fracture (from falling while walking!), but the entire left side of my body had much, much weaker bones.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"686\" height=\"1024\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240121_23000593-686x1024.jpg\" alt=\"\" class=\"wp-image-363\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240121_23000593-686x1024.jpg 686w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240121_23000593-201x300.jpg 201w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240121_23000593-768x1146.jpg 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240121_23000593-1029x1536.jpg 1029w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240121_23000593-8x12.jpg 8w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240121_23000593.jpg 1184w\" sizes=\"auto, (max-width: 686px) 100vw, 686px\" \/><\/figure>\n\n\n\n<p>I was a 1 year old with bones that seemed as old as a 50 year old\u2019s! What was going on here?<\/p>\n\n\n\n<p>It took us over three years until my parents and I got an answer. They ran from doctor to doctor but in Brazil, in the 90s and without the benefit of the internet, it took a&nbsp;<em>long&nbsp;<\/em>time until they found the diagnosis. When I was four, I was diagnosed with both FD and MAS.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"678\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240122_02340622-1024x678.jpg\" alt=\"\" class=\"wp-image-365\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240122_02340622-1024x678.jpg 1024w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240122_02340622-300x199.jpg 300w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240122_02340622-768x509.jpg 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240122_02340622-1536x1017.jpg 1536w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240122_02340622-2048x1356.jpg 2048w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/img20240122_02340622-18x12.jpg 18w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>By then, I already had other symptoms, such as multiple bone fractures and precocious puberty. While I did have an irregular colored skin spot on my arm, that was really not very noticeable, nor a problem. The other two, though, majorly shaped my life.<\/p>\n\n\n\n<p>I\u2019m now 29 years old and a lot of my medical history has been all about trial and error. Since there\u2019s no cure or even a universally accepted treatment, many medications and exams I took were tests of what was thought could work back then.<\/p>\n\n\n\n<div class=\"wp-block-group is-nowrap is-layout-flex wp-container-core-group-is-layout-6c531013 wp-block-group-is-layout-flex\">\n<p>As a child I had four fractures on my left leg, four on my left arm, and uncountable number of breaks on y fingers and ribs. I also went through precocious puberty. I hit my growth spurt at 7 years old and stayed that height; so while I was the tallest kid in class back then, now I\u2019m a very short adult (but very tall, for a hobbit!).<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC09750-scaled.jpg\" alt=\"\" class=\"wp-image-368\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC09750-scaled.jpg 2560w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC09750-300x200.jpg 300w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC09750-1024x683.jpg 1024w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC09750-768x512.jpg 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC09750-1536x1024.jpg 1536w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC09750-2048x1365.jpg 2048w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC09750-18x12.jpg 18w\" sizes=\"auto, (max-width: 2560px) 100vw, 2560px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-group is-nowrap is-layout-flex wp-container-core-group-is-layout-6c531013 wp-block-group-is-layout-flex\">\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"640\" height=\"480\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC00289.jpg\" alt=\"\" class=\"wp-image-356\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC00289.jpg 640w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC00289-300x225.jpg 300w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/DSC00289-16x12.jpg 16w\" sizes=\"auto, (max-width: 640px) 100vw, 640px\" \/><\/figure>\n\n\n\n<p>After I hit adulthood, my medical challenges plateaued thankfully. I\u2019ve been able to lead a calmer, more independent life now but I still face many difficulties in my daily lifedaily-life \u2013 mostly due to lack of infrastructure in Brazilian places and facilities.<\/p>\n<\/div>\n\n\n\n<p>It\u2019s mostly due to this, plus the difficulty in getting a diagnosis even nowadays here, that I\u2019ve never met another fellow patient in my life. That is, until September 2023.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">When I met the FD\/MAS Alliance<\/h3>\n\n\n\n<p>In 2022, I found FD\/MAS Alliance online. I was amazed that first, an organization about FD\/MAS existed! And not only that, but there was actually ongoing medical research in the world! And that the&nbsp;<a href=\"https:\/\/videocast.nih.gov\/watch=49386\">NIH<\/a>&nbsp;has been studying this for 25 years now.<\/p>\n\n\n\n<p>I was honestly shocked. There\u2019s such a lack of information on these diseases in Portuguese, and most are hidden behind medical articles and paywalls, I had no idea there was an actual interest and research ongoing happening. I was so surprised and also, for the first time in my life, hopeful. Even if nothing has been discovered yet and no set treatment or cure, just the pure fact that people do care and are actually researching this gave me so much more hope and optimism for the future.<\/p>\n\n\n\n<p>And in 2023, when I found out there\u2019d be&nbsp;<a href=\"https:\/\/fdmasalliance.org\/2023-fdmas-conference-recap\/\" target=\"_blank\" rel=\"noreferrer noopener\">an event in September in Washington DC<\/a>&nbsp;for the first time since the pandemic, I decided I had to be there. This was the chance I\u2019d been waiting for: to meet people with the condition, to get more information, to meet doctors who research it and just really get involved with something to do with these two diseases that I\u2019ve lived with for my whole life.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"819\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_9458-watermarked-1024x819.jpg\" alt=\"\" class=\"wp-image-358\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_9458-watermarked-1024x819.jpg 1024w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_9458-watermarked-300x240.jpg 300w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_9458-watermarked-768x614.jpg 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_9458-watermarked-1536x1229.jpg 1536w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_9458-watermarked-2048x1638.jpg 2048w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_9458-watermarked-15x12.jpg 15w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>N\u00e3o foi f\u00e1cil: tive que planejar e economizar muito para ir \u00e0 confer\u00eancia (a convers\u00e3o do d\u00f3lar para o real \u00e9 brutal), mas acabei conseguindo e convenci meus pais a participarem como uma viagem em fam\u00edlia. E sou muito grata at\u00e9 hoje, um ano depois, por ter conhecido mais de 30 pacientes e tamb\u00e9m por ter participado de semin\u00e1rios de especialistas. Aprendi muito com todos que conheci; foi incr\u00edvel.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"2048\" height=\"2343\" src=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Conference-2.jpg\" alt=\"\" class=\"wp-image-361\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Conference-2.jpg 2048w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Conference-2-262x300.jpg 262w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Conference-2-895x1024.jpg 895w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Conference-2-768x879.jpg 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Conference-2-1343x1536.jpg 1343w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Conference-2-1790x2048.jpg 1790w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FDMAS-Conference-2-10x12.jpg 10w\" sizes=\"auto, (max-width: 2048px) 100vw, 2048px\" \/><\/figure>\n\n\n\n<p>I know it\u2019s very cliche to say, \u201cI didn\u2019t feel alone\u201d but really, in a conference room with so many people who either had or studied or cared about such rare conditions, it honestly felt like a miracle. I met and talked to people who just got what it was like without needing to explain much.<\/p>\n\n\n\n<p>And even better, I met people with totally different challenges due to how FD or MAS manifested in them (it\u2019s all about where the gene mutation happened and the intensity, after all). While in my head I knew that each person with FD\/MAS was wildly different from the other, it was something else altogether to experience it in person! It was seriously inspiring and educational and just incredible.<\/p>\n\n\n\n<p>I was also honored to give an interview (!) at the event to share my life, history and what FD\/MAS was to me. It was very nerve wracking but also a super fun and fresh experience. Never thought I\u2019d be giving interviews and so professionally too!<\/p>\n\n\n\n<p>And for whoever has a condition, any condition, be it rare or not, I seriously recommend trying to meet others who also have it. Your struggles might be completely different but&nbsp;<strong>it\u2019s so worth it to just be able to talk and exchange experiences with people who do get it.<\/strong>. Suas dificuldades podem ser completamente diferentes, mas vale muito a pena poder conversar e trocar experi\u00eancias com pessoas que realmente entendem.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"819\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_International-groups-watermarked-1024x819.jpg\" alt=\"\" class=\"wp-image-360\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_International-groups-watermarked-1024x819.jpg 1024w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_International-groups-watermarked-300x240.jpg 300w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_International-groups-watermarked-768x614.jpg 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_International-groups-watermarked-1536x1229.jpg 1536w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_International-groups-watermarked-2048x1638.jpg 2048w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/FD_MAS-2023_International-groups-watermarked-15x12.jpg 15w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>And even if you don&#8217;t have a disease, but knows someone who does, it&#8217;s also so worth it to meet fellow caretakers.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"614\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/04\/FD_MAS-2023_9452-1024x614.jpg\" alt=\"\" class=\"wp-image-37\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/04\/FD_MAS-2023_9452-1024x614.jpg 1024w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/04\/FD_MAS-2023_9452-300x180.jpg 300w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/04\/FD_MAS-2023_9452-768x461.jpg 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/04\/FD_MAS-2023_9452-1536x922.jpg 1536w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/04\/FD_MAS-2023_9452-2048x1229.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\">How I became a patient advocate&nbsp;<\/h3>\n\n\n\n<p>The conference truly canged my world. And I decided to make things happen:<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><a href=\"https:\/\/www.instagram.com\/reel\/C3qm6_iMDps\/?utm_source=ig_web_copy_link\" target=\"_blank\" rel=\"noreferrer noopener\"><img loading=\"lazy\" decoding=\"async\" width=\"842\" height=\"1497\" src=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/image-3.png\" alt=\"\" class=\"wp-image-375\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/image-3.png 842w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/image-3-169x300.png 169w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/image-3-576x1024.png 576w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/image-3-768x1365.png 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/image-3-7x12.png 7w\" sizes=\"auto, (max-width: 842px) 100vw, 842px\" \/><\/a><\/figure>\n\n\n\n<ul class=\"wp-block-list\">\n<li>I got involved with not one but two organizations: the\u00a0<a href=\"https:\/\/fdmasalliance.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">US with the FD\/MAS Alliance.<\/a>in the US, and the\u00a0<a href=\"https:\/\/www.instagram.com\/fdmas.brasil\/\" target=\"_blank\" rel=\"noreferrer noopener\">upcoming Brazilian<\/a>one.\u00a0<\/li>\n\n\n\n<li>I also started using social media, something I never though I\u2019d do.\u00a0<a href=\"https:\/\/www.instagram.com\/reel\/C3qm6_iMDps\/?utm_source=ig_web_copy_link&amp;igsh=MzRlODBiNWFlZA==\" target=\"_blank\" rel=\"noreferrer noopener\">I was honored to do a video for the FD\/MAS Alliance explaining what FD\/MAS is from a patient perspective.<\/a>.\u00a0<\/li>\n\n\n\n<li>Aside that, I also did\u00a0<a href=\"https:\/\/www.instagram.com\/reel\/C3qm6_iMDps\/?utm_source=ig_web_copy_link&amp;igsh=MzRlODBiNWFlZA==\">uma s\u00e9<\/a><a href=\"https:\/\/www.instagram.com\/reel\/C3qm6_iMDps\/?utm_source=ig_web_copy_link&amp;igsh=MzRlODBiNWFlZA==\" target=\"_blank\" rel=\"noreferrer noopener\">r<\/a><a href=\"https:\/\/www.instagram.com\/reel\/C3qm6_iMDps\/?utm_source=ig_web_copy_link&amp;igsh=MzRlODBiNWFlZA==\">series of videos in Portuguese for the Brazilian account<\/a>\u00a0and I translated the FD\/MAS factoids into Portuguese.\u00a0<\/li>\n<\/ul>\n\n\n\n<p>Recording myself for these videos was a struggle at first, but it\u2019s also led me to a self-discovery and self-esteem journey in this process.<\/p>\n\n\n\n<p>By getting more involved with advocacy, it has also helped me see the world in a new way and expand my horizons. I\u2019ve gotten in touch with Brazilian patients and answered their questions because of those videos \u2013 turns out I had to take that first step to find them, not the other way around. I\u2019ve also been able to share conference resources with my doctors and health specialists and that helps them, me, and any other patients with FD\/MAS who might seek out care.<\/p>\n\n\n\n<p>Now I\u2019m continuing to create content (mostly in Brazilian Portuguese) explaining FD\/MAS to fellow patients. One of the things I\u2019m proudest of is getting involved with the Alliance, fellow patients and translating content to my native language from English. Just like I had been lost without information, so had some of my fellow Brazilian patients and parents. It was very rewarding to share resources with them and answer questions (yes, you can live a full and good life with FD\/MAS). What was a one-time thing (attending the conference) has become a passion of mine and I hope to be able to help others in whatever way I can.<\/p>\n\n\n\n<p>Nowadays I continue to create content (especially in Portuguese) explaining what FD\/MAS is to others on&nbsp;<a href=\"https:\/\/www.instagram.com\/biakaorimi\/\">Instagram<\/a>,&nbsp;<a href=\"https:\/\/www.tiktok.com\/@biakaorimi\">Tiktok<\/a>&nbsp;and&nbsp;<a href=\"https:\/\/youtube.com\/@biakaorimi?si=WJZknsxrR94Wy1SX\" target=\"_blank\" rel=\"noreferrer noopener\">YouTube<\/a>.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">What I hope for the future<\/h3>\n\n\n\n<p>I used to joke as a teenager that the best hope I had regarding FD\/MAS for research would be if a rich or influential person had (or knew someone who had) it and invested a bunch in research. That was the only way I could think people would have any knowledge or interest in this condition. I wondered if there\u2019d ever come a day I could meet someone who knew of FD\/MAS and on very hopeful days, actually meet a fellow patient. But then I stopped myself, thinking it was all too unrealistic.<\/p>\n\n\n\n<p>Even when I\u2019m in my routine ultrasound checkup, the technician usually recognizes the disease name. They don\u2019t quite know it (one of them said, and I\u2019ll never forget it: \u201cI memorized it for tests but don\u2019t really remember what it\u2019s about, can you tell me?\u201d) but<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"1024\" src=\"http:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/2019-11-16-15.40.03-768x1024.jpg\" alt=\"\" class=\"wp-image-352\" srcset=\"https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/2019-11-16-15.40.03-768x1024.jpg 768w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/2019-11-16-15.40.03-225x300.jpg 225w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/2019-11-16-15.40.03-1152x1536.jpg 1152w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/2019-11-16-15.40.03-1536x2048.jpg 1536w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/2019-11-16-15.40.03-9x12.jpg 9w, https:\/\/biakaorimi.com\/wp-content\/uploads\/2024\/09\/2019-11-16-15.40.03-scaled.jpg 1920w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/figure>\n\n\n\n<p>Al\u00e9m disso, mesmo quando estou em um exame de ultrassom de rotina, o t\u00e9cnico geralmente reconhece o nome da doen\u00e7a. Eles n\u00e3o sabem exatamente o que \u00e9 (um deles disse, e eu nunca vou me esquecer disso: \u201cDecorei para as provas, mas n\u00e3o me lembro bem do que se trata, pode me dizer?\u201d), mas s\u00f3 o fato de saberem por nome j\u00e1 me deixa feliz. Sim, ainda tenho que explicar minha condi\u00e7\u00e3o, mas hoje as pessoas j\u00e1 ouviram falar dela. E agora h\u00e1 pesquisa e interesse \u2013 e em diversos pa\u00edses!<\/p>\n\n\n\n<p>Just knowing that there\u2019s significant interest and research on this very rare and previously unknown condition gives me hope.<\/p>\n\n\n\n<p>I can only be grateful to everyone who\u2019s given their precious time and skills to research it, gather funds via fundraising, get involved in organizations or just share about their experiences with FD\/MAS. Thank you all, it was a wonderful and truly life-changing event for me to go to the Conference in 2023 and get involved with the FD\/MAS Alliance.&nbsp;<\/p>\n\n\n\n<p>I hope I can give back as well!<\/p>","protected":false},"excerpt":{"rendered":"<p>What an odyssey this was!<\/p>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[10,13,9],"tags":[],"class_list":["post-652","post","type-post","status-publish","format-standard","hentry","category-accessibility","category-en","category-fdmas"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - 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