In this new 'Conversations With' episode, Lara Bloom, President and CEO of The Ehlers-Danlos Society, joins Stevie Boebi, Annie Segarra, and Elliot Pippin to talk about accessing care as a 2SLGBTQIA+ individual. Ryder Richard was due to join us but sadly couldn't make it due to health issues - we hope to speak with you soon Ryder!
2SLGTBQIA+ is an acronym for Two-Spirit, Lesbian, Gay, Bisexual, Transgender, Queer and/or Questioning, Intersex, Asexual, and the plus reflects the countless affirmative ways in which people choose to self-identify.
The discussion features personal stories, highlighting the challenges in obtaining diagnoses, the role of self-advocacy, and queerness, neurodivergence, and EDS and HSD. The importance of social media and community for support and resource sharing, and the need for greater accessibility in queer spaces are key topics.
Meet Our Guests:
Annie Segarra @theannieelainey is a dedicated activist, content creator, and a proud member of the LGBTQ+ community. Living with Ehlers-Danlos syndrome, she is well-known for her advocacy work in disability rights, body positivity, and social justice, using her engaging videos and insightful discussions to raise awareness. With a powerful voice and a commitment to inclusivity, Annie strives to make the world a more accepting and accessible place for everyone. Her work continues to challenge norms, celebrate diversity, and inspire meaningful change, particularly in the realm of chronic illness and disability activism.
Elliot Pippin is a 25-year-old Social Media Engagement Manager based in Pittsburgh. Diagnosed with hypermobility spectrum disorder (HSD) this year, Elliot has become a fierce advocate for accessibility and inclusivity. Elliot’s professional expertise in social media engagement shines through his innovative strategies to amplify marginalized voices and build robust, supportive networks. Whether crafting unique creations, biking through Pittsburgh's scenic trails, or organizing community care initiatives, Elliot embodies a commitment to making the world a more inclusive and connected place.
@stevie Boebi is an international queer peer educator who started out on YouTube in 2010, creating the first sex education video series. Her content ranges from ‘how-to’ style tutorials to vagina ring life with Ehlers-Danlos syndrome. Her videos are accessible, entertaining, and desperately needed.
Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD), and related disorders.
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