Hi! I’m Bia Kaori, a researcher and teacher.
My main topics of study are:
1) Accessibility and Infrastructure.
2) Population aging and its impacts on society.
My experiences as a mixed Brazilian-Japanese woman with a physical disability have given me a unique perspective in the world – one I enjoy sharing a lot!
I love my Japanese roots and always try to stay in touch with them via celebrating the culture, but also researching and sharing it. I’m a big fan of Japanese cuisine, anime and manga.
I can’t go a day without drinking tea or reading something. During my free time, I also love to teach, cook, draw, sing and write. My bucket list is never-ending!
Languages:
Fluent:
- Portuguese (Brazilian) - Native
- English - TOEFL IBT (119/120) + CELTA Certificate for English Teaching
Studying::
– Japanese (JLPT N2)
– French (DALF C2)
What do I Research?
My research focuses in two main points: population aging and the (lack of) infrastructure and accessibility in many countries - mainly Brazil, Japan and the United States. My biggest goal is to analyze, understand and teach what each country's experience can show us. What can Japan teach us about its take on population aging and demographics as the first super-ageing society in the world? What can Brazil teach us about its rich, diverse culture and population - but also its challenges with infrastructure and educational and economic barriers? And what can the US show regarding its acessibility and health system? There's so much to go on that each topic is a lecture in itself!
In my studies, I usually show what’s been done so far: what works, what doesn’t work and what could work. I help companies, NGOs and the public sector analyze infrastructure and accessibility.
Even if you don’t have a disability or aren’t old (yet), it’s imperative to know why accessibility is important and why ageism is something that must be discussed more – so everyone is in the loop and we can find better solutions together.
I don’t believe in keeping research just in academia. I want to share with everyone what I learn and that’s why I use social media and create content. Just like I was lucky to be able to discover many things and learn via the internet, I’d love to create the same opportunity for others, even if it’s just one person.
You can find me on Instagram, YouTube, TikTok, LinkedIn and published in places such as USP Academic Journal.
O Que é FD/MAS?
FInd out more about my story with FD/MAS in these blogs by the American NGO FD/MAS Alliance:
- Part 1 – Beatriz: A Patient Perspective from Brazil
- Part 2 – When Beatriz met the Alliance!
- Part 3 – Beatriz Becomes an Advocate
And I also wrote a post in this site (both in English and Portuguese) about this whole odissey!
Why did I start to care about acessibility? Because I lived it. I know what it's like to have zero acessibility in most places in my daily life.
I'm a person with physical disabilities due to not one, but two rare diseases. When there's a mutation in the GNAS gene, usually two possibilites occur:
- FD - Fibrous Dysplasia: the bones are brittle, weaker.
- MAS - McCune-Albright Syndrome: aside the bones, it might also affect the endocrine system (early puberty, hormonal irregularities, thyroid and policystic ovaries) and/or the skin (irregular spots).
In my case, I have both: FD/MAS. I had almost every possible symptom, from precocious puberty to weak bones (in fact, my whole left side has brittle bones and looks quite different on a X-Ray)! I had my first fracture when I was one and it took my parents three years to find out the diagnosis. Nowadays, there's a lot of information online, but this is still a very rare condition that is very difficult to diagnose and treat. ambos: FD/MAS. Tive quase todos os sintomas possíveis, desde puberdade precoce a ossos fracos (na verdade, todo o meu lado esquerdo é totalmente diferente!). Resumo da ópera: tive minha primeira fratura quando tinha um ano de idade e levou três anos até que meus pais encontrassem um diagnóstico. Hoje em dia, há muitas informações on-line, mas essa condição continua sendo muito rara e o diagnóstico ainda não é fácil.
Just like with my research, my goal is to share knowledge and talk about FD/MAS, what life is like for me, and advocate for fellow patients and families of patients.
Since 2023, I've been a patient advocate both in Brazil as well as in the US with the FD/MAS Alliance.It's an honor to be the first person in Latin America to become a patient advocate for the FD/MAS Alliance!
It's been an incredible experience to meet other patients with the same conditions. It's also amazing to be able to share materials and resourcing both in English and Portuguese for people all over the world.
What a fun odyssey it's been! For someone both shy and camera-shy, I was at first extremely nervous about recording an educational video on what FD/MAS is. In the end, it was a fantastical experience and it helped me learn so much about myself, my disease and social network. It also led me to meeting many wonderful people across many countries:
I was also very happy to be able to contribute in another aspect: translating the English content to Brazilian Portuguese this year. This is the first time there's official content in Portuguese about these topics:
Nossa colaboração tem sido incrível! Juntamente com a FD/MAS Alliance, produzi uma série de vídeos explicando sobre meu cotidiano, desafios e como é minha mobilidade tendo essas duas síndromes raras.
Também tive a honra de ser co-host do primeiro evento mundial comunitário sobre FD/MAS. Mensalmente, pacientes e familiares se reúnem de quartas e compartilham experiências e soluções. Na primeira reunião, eu expliquei sobre como foi o processo de morar sozinha e quais adaptações foram necessárias para meu apartamento. Isso rendeu uma conversa muito rica e pessoal, em que todos compartilharam não só ideias mas também medos, ansiedades e buscaram se apoiar. Foi uma experiência inesquecível!
Mídia Social explicando FD/MAS
E agora estou compartilhando em diversas redes informações sobre a síndrome, meus desafios diários, conquistas e muito mais: