Visual Description: Image of a microphone with the words, Hacking Hypermobility with Luna & Shelli
Jesenia Joins TikTok Live Event with Hacking Hypermobility Advocates
Connections are forged across virtual realms, Jesenia, a passionate collaborator with Calling Up Justice and co-founder of One Free Community, recently joined a TikTok Live event with the inspiring hosts of “Hacking Hypermobility.” This unique podcast hosted by Luna and Shelli, strives to shed light on the difficulties of life as a “Zebra,” a term affectionately used to describe people navigating the world of hypermobility spectrum disorders, including Ehlers-Danlos Syndromes.
The mission of Hacking Hypermobility is to explore the multifaceted dimensions of health and wellness concerns faced by people on the hypermobility spectrum. Luna and Shelli, bonded by a shared interest in these conditions, aim to raise awareness, provide support, and accelerate research into connective tissue disorders that affect countless lives. Their story is not only about personal experiences but also a journey of empowerment and advocacy, urging others on this spectrum to proactively manage their health.
The Zebra metaphor encapsulates the heart of their mission. In medical training, the phrase “When you hear hoof beats, look for horses — not Zebras” is imparted to doctors as a reminder to focus on common explanations rather than rare conditions. Recent medical research reveals that the more common types of inherited connective tissue disorders, such as Hypermobile Ehlers-Danlos Syndrome, are more prevalent than previously believed. Intriguingly, these conditions also intersect with other neurodivergent spectrums, like ADHD and Autism Spectrum Disorder, at a higher rate than in the general population.
Jesenia’s participation in the TikTok Live event brought a powerful perspective to the discussion. With a steadfast commitment to building a more equitable and inclusive world through collective action and community building, she illuminated the intersectionality within EDS with ADS, ADHD, in communities of the global majority (aka BIPOC) and the challenges posed by white supremacy. Together, Jesenia, Luna and Shelli delved into the critical issues of diversity, representation, and the urgent need for more inclusive dialogues in advocacy, research, support networks, and medical gaslighting. Their conversation resonated not only with those directly affected by hypermobility spectrum disorders but also with anyone striving to dismantle systemic barriers and create a more equitable world for all.
Jesenia’s collaboration with Hacking Hypermobility exemplifies the power of community and the potential for collective action to drive positive change in the realms of health, wellness, and social justice. It’s a testament to the strength of individuals united by a shared purpose, even when physically distant, in their unwavering pursuit of a more inclusive and compassionate world.
About the Author
Jesenia, a collaborator with Calling Up Justice and cofounder of One Free Community, is working to build a more equitable and inclusive world via collective action by building communities. Learn more on her Website or Read Jesenia’s Bio.