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Crossing Borders, Connecting Worlds: My Journey with Neurodivergence and Connective Tissue Disorders

Updated: Dec 30, 2023

Dr Kana Grace, PhD

Neurodivergent neurodivergence advocate and researcher

Okinawa, Japan




Navigating life as a neurodivergent person often brings unique challenges, as I've discovered through my own journey. Despite consulting various medical professionals, many of my diverse physical symptoms remain a mystery.


Ballet has been a significant part of my life since I was three, and paradoxically it camouflaged my neurodivergence and symptomatic hypermobility. However, everything started to shift when I stumbled upon information about connective tissue disorders, especially Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS). This discovery resonated with me, much like when I first learned about autism in 2016. I immersed myself in exploring the link between neurodivergence and connective tissue disorders, feeling as though I had explored every possible source on the internet. My research led me to the works of experts like Jane Green and Jessica Eccles, which stood out significantly. So, imagine my surprise and honour when Jane invited me to contribute to their work!







A photo capturing me in a scorpion pose, taken after an episode in which I subluxated my shoulder while playing with my small 3.5-kilo schnauzer. In the photo, I am holding my left arm due to limited movement in my right arm following the subluxation














Residing in Okinawa, Japan, I often find myself grappling with the gap between my aspirations and what I'm physically able to achieve. This isn't solely due to my neurodivergence and the unique way I perceive the world, but also because of the day-to-day, and even moment-to-moment, fluctuations in my health. The conventional 9-to-5 work model isn't feasible for me. My interests dictate my focus; I pour my energy wholeheartedly into what captivates me, while my brain seems to automatically shut out what doesn't. This has made traditional job hunting a challenge. Though I wish to contribute more actively to SEDSConnective, the symptomatic hypermobility and neurodivergent charity, my current role as an international neurodivergent advisor is a start in making a difference within the community.

 

Upon my return to Japan from the UK, I was struck by the stark contrast in the levels of awareness and knowledge regarding neurodivergence and symptomatic hypermobility. The UK's understanding and resources in these areas seem far more advanced, highlighting the significance of organizations like SEDSConnective. As I connect with SEDSConnective and other experts in this field, my goal is to champion the cause of neurodivergent people and their families in Japan. This includes advocating for better recognition and support for physical health challenges within the neurodivergent community. It's a journey of advocacy and learning, aiming to bridge the gaps in understanding and support for neurodivergent people, both in Japan and beyond.


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