Season 5, Episode 17: In conversation with Beatriz Kaori Miyakoshi Lopes

I am excited to welcome Beatriz “Bia” Kaori Miyakoshi Lopes to the podcast! 🗣️🦓✨
About Bia:
Bia Kaori is the first patient advocate for FDMAS in Latin America. Her journey in social media began recently, but it has already been a wild and impactful ride. Living with not one but two rare diseases, and with a master’s research background focused on accessibility and infrastructure, Bia is dedicated to sharing knowledge and striving to make the world a little better.
As the first patient advocate for FDMAS in and from Latin America, Bia recognizes the significant lack of answers, cures, information, and patient voices in the region. While FDMAS remains globally under-researched, the scarcity of resources in Latin America is even greater. At 28 years old, Bia was deeply moved upon finally meeting others with the same condition—an experience that required traveling to the United States.
An interview with the FDMAS Alliance to share her story served as a turning point, inspiring Bia to expand her advocacy through social media. There, she documents life with FDMAS by sharing personal experiences, limitations, struggles, and successes.
Today, Bia continues to use her platform to showcase everyday realities, break stigma around accessibility and rare diseases, and ensure that voices like hers are heard in Latin America and beyond.
What is Fibrous Dysplasia/McCune-Albright Syndrome?:
Fibrous dysplasia (FD) is a rare disease in which normal bone is replaced with scar-like fibrous tissue. This condition can occur in any bone in the body and sometimes affects multiple bones. The most common sites are the bones of the skull and face—Bia has hers in her left palate, cheek, and eye bone.
Fibrous dysplasia can occur alone or as part of McCune-Albright Syndrome (MAS), in which the endocrine system and skin are also affected.
These are two very rare, chronic diseases without a cure.
Resources Bia shared?:
@fdysplasiaorg
https://fdmasalliance.org

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