When Beatriz met the Alliance!

This is a continuation of Beatriz’s Story. You can read about Beatriz’s experience before attending the FD/MAS Community Conference while growing up with FD/MAS in Brazil here.

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 NIH has been studying this for 25 years now. I was honestly shocked. There’s 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.

And in 2023, when I found out there’d be an event in September in Washington DC for the first time since the pandemic, I decided I had to be there. This was the chance I’d 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’ve lived with for my whole life. It wasn’t easy: I had to plan and save up a lot to go to the conference (the dollar to real currency is brutal, I tell you) but eventually, I managed to do it and convince my parents to join in for a family trip.

And I’m so grateful to this day, a year later, that I got to meet 30+ fellow patients and also attend seminars from experts in the field about it. I learned so much from everyone I met; it was incredible.

I know it’s very cliche to say, “I didn’t feel alone” 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. And even better, I met people with totally different challenges due to how FD or MAS manifested in them (it’s 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.

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’d be giving interviews and so professionally too!

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 it’s so worth it to just be able to talk and exchange experiences with people who do get it. And even if you don’t have a condition but take care of someone who does, it’s also so worth it to meet fellow caretakers.

This Conference really changed my world. Find out just how much the conference had a positive impact in my life in the next post!

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!