Beatriz Becomes an Advocate
Previously we shared Beatriz’s experience growing up with FD/MAS in Brazil and then finding FD/MAS Alliance as an adult. Attending the FD/MAS Community Conference in 2023 inspired her to become a more active advocate. Now, a year later, Beatriz shares some of the ways the conference changed her.
The FD/MAS Alliance Community Conference really changed my world. Here are just some of the ways I’ve been affected:
I got involved with not one but two organizations: the American based FD/MAS Alliance and the upcoming Brazilian one! I also started using social media, something I never though I’d do. I was honored to do a video for the FD/MAS Alliance explaining what FD/MAS is from a patient perspective and also to do a series of videos in Portuguese for the Brazilian account and I translated the FD/MAS factoids into Portuguese. Recording myself for these videos was a struggle at first, but it’s also led me to a self-discovery and self-esteem journey in this process.
By getting more involved with advocacy, it has also helped me see the world in a new way and expand my horizons. I’ve gotten in touch with Brazilian patients and answered their questions because of those videos – turns out I had to take that first step to find them, not the other way around. I’ve 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.
Now I’m continuing to create content (mostly in Brazilian Portuguese) explaining FD/MAS to fellow patients. One of the things I’m 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.
What I hope for the future
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’d 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.
Nowadays, though, things are definitely better, and the internet is a big reason for that. Sure, it can be used in good and bad ways, but the most important thing for me is how I was able to get information about my condition, find out about organizations abroad, go to the Conference, meet people (in my country and abroad) who have it and really, just expand my horizons.
Even when I’m in my routine ultrasound checkup, the technician usually recognizes the disease name. They don’t quite know it (one of them said, and I’ll never forget it: “I memorized it for tests but don’t really remember what it’s about, can you tell me?”) but just the fact that they know of it makes me happy. Yes, I still have to explain my condition, but it’s been heard of and there’s now ongoing research and interest – worldwide even!
Just knowing that there’s significant interest and research on this very rare and previously unknown condition gives me hope. I can only be grateful to everyone who’s 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. I hope I can give back as well!
~Beatriz Kaori Miyakoshi Lopes
You can connect with Beatriz on social media here. You can also reach out to her directly via profbiakaorimi@gmail.com, or stay tuned in the next few days as we continue to share more of Beatriz’s story!
Join us in conversation: You can also join Beatriz live on September 25th, 2024 at 7:30 pm EDT for a Community Social and a discussion of how to live independently with FD/MAS!