EDS Advocates to Follow on Social Media

The Ehlers-Danlos Syndromes may be considered a group of (mostly) rare connective tissue disorders; however, our community is more diverse and stronger than ever, with many advocates sharing their experiences and knowledge via social media. Chronic Pain Partners put together a list of EDS advocates meant to be a work in progress and, of course, non-exclusive and sorted alphabetically. Please post links to your favorite advocates below and let us know why you like their content, and we’ll include them on this list. Let’s keep empowering other fellow EDSers by sharing their content! 

 

Anaunicornzebra: Adrienne Ferron is an EDS advocate, podcaster, and social media influencer (#LifeofanEDSerwomanofcolor) who lives with EDS and other conditions. Chronic Pain Partners has interviewed Ferron about the challenges she faces as a woman of color who navigates the American healthcare system with Ehlers-Danlos syndrome, what she wishes the community would do differently, and her top tips to improve quality of life as a Person of Color (POC) with a rare connective tissue disorder.

https://www.instagram.com/anaunicornzebra/

Anne Maitland: Dr. Maitland is a board-certified Allergist-Immunologist and Asst. Professor at Mount Sinai School of Medicine who specializes in mast cell disorder. 

https://twitter.com/asktheallergist

Annie Elainey: Annie Elainey is a Latinx and Queer influencer who has EDS and shares their journey with chronic illness on their YouTube channel and Instagram page.

https://www.instagram.com/annieelainey/

Anoushé Husain: Anoushé Husain is a civil servant and para climber who broke the Guinness Book of World Records for climbing the greatest distance on a climbing wall in one hour as a female climber with only one hand. She was born with half an arm, has beaten cancer, and was diagnosed with Ehlers-Danlos Syndrome (EDS). Chronic Pain Partners has interviewed Anoushé here.

https://www.instagram.com/anoushehusain/

Brianne Benness: Brianne Benness hosts No End In Sight, a podcast about life with chronic illness and a chronically ill person’s journey to diagnosis. She co-founded Stories We Don’t Tell, where she talks about hypermobility, mast cell disorders, and recontextualizing old experiences using new frameworks. Benness has also created an online community on Twitter, #NEISvoid, where people can meet and discuss chronic illness and symptoms, whether they were diagnosed with a chronic illness or not. Chronic Pain Partners interviewed Brianne here.

https://twitter.com/bennessb

Brianna Cardenas: Brianna Cardenas is a physician assistant who also identifies as a queer woman of color. She offers resources on EDS and related conditions on her social media channels. She has also started an EDS clinic. Chronic Pain Partners has interviewed Brianna Cardenas here.

https://www.instagram.com/briannacardenas_pa.c/

Cassandra A. Campbell: Cassandra Campbell is a coach, author, and EDS advocate. Chronic Pain Partnersinterviewed Cassandra about how she learned to accept her chronic condition and adapted her life around EDS while achieving her goals. Cassandra is also the co-host of the EDS Unplugged podcast.

https://www.instagram.com/cassandra_a_campbell/

Christie Cox Calm: Christie Cox is a fellow zebra and author of the new EDS book Holding It All Together When You’re Hypermobile. Cox is also a part of the Chronic Pain Partners media team and shares her experiences in this interview.

https://www.instagram.com/christiecoxcalm/

Chronically Jenni: Jenni is a disabled model and creator, sharing chronic illness hacks & mobility aid tips and raising awareness for EDS, POTS, and related conditions.

https://www.instagram.com/chronicallyjenni/

Chronically Ry: Ryann Mason is a disability advocate and has been living with EDS since their diagnosis at 16 years old. Originally from a small rural town in Virginia, they were crowned Miss Virginia Wheelchair in 2020 and 2021. Since then, Mason has been rolling forward with their continued nursing and sex education programs for people with disabilities. Read the interview with Ryann here.

https://www.instagram.com/chronically_ry/

Cort Does Science: Dr. Cortney Gensemer is a researcher/scientist studying Ehlers-Danlos Syndromes & related conditions at the Norris Lab. Read Chronic Pain Partners’ interview with Dr. Gensemer here.

https://www.instagram.com/cortdoesscience/

Colourblind Zebra: Abby’s colorful, rainbow art raises awareness for disability, EDS, rare diseases, and more.

https://www.instagram.com/colourblind_zebra/

Ehlersdanlosboy: Mpho Matseka raises awareness for EDS and is one of a few men speaking publicly about the challenges related to living with EDS and comorbid conditions.

https://www.instagram.com/ehlersdanlosboy/

Emily Casanova: Emily Casanova is a zebra, PhD, and Assistant Professor at Loyola University focusing on EDS and autism.

https://twitter.com/emlywill

Emma Reinhold: Dr. Emma Reinhold is a former GP/Research/Advisor on EDS, MCAS, and more.

https://twitter.com/DrEReinhold

Footprints No Boundaries: Shruti Chopra is a chronic health blogger, YouTuber, and poet who shares her journey with endometriosis, EDS, MCAS, CFS, and PoTS.

https://www.instagram.com/footprintsnoboundaries/

Hells Bells and Mast Cells: Keeya shares her MCAS journey and her remission.

https://www.instagram.com/hellsbellsandmastcells/

Hypermobility Doctor: Lilian Holm, PT, DPT, provides individualized Physical Therapy services as well as Health and Wellness Coaching, drawing on over 27 years of experience in many prestigious Chicagoland clinics.

https://www.instagram.com/hypermobilitydoctor/

Hypermobility MD: Dr. Linda Bluestein is a medical doctor with EDS who shares resources and knowledge on her Instagram, and also hosts the podcast Bendy Bodies.

https://www.instagram.com/hypermobilitymd/

https://www.instagram.com/bendy_b

Inked Bunny: Lily G is a disabled multi-media artist with EDS who creates beautiful and colorful stuffed animals and other self-made art she sells online to raise awareness.

https://www.instagram.com/inked.bunnyx/

Izzy Kornblau: Izzy Kornblau is a board-certified cardiovascular genetic counselor researching EDS.

https://www.instagram.com/izzy.kornblau/

Jameela Jamil: Jameela Jamil is a British actress, presenter, and activist who gained prominence for her role as Tahani Al-Jamil in the television series The Good Place and has been an outspoken advocate for body positivity and mental health awareness. She also lives with EDS and related conditions.

https://twitter.com/jameelajamil

Jeannie Di: Jeannie Di Bon is a Movement Therapist specializing in working with people with hypermobility, Ehlers-Danlos Syndrome (EDS), and chronic pain. She has created an online course and app called the Zebra Club. Chronic Pain Partners has reviewed Jeannie’s app here.

https://www.instagram.com/jeannie_di/

Jennifer Brea: Jen Brea is a filmmaker most known for her film Unrest, which highlights the challenges of living with ME/CFS. She is also the co-founder of the ME Action Network and currently works on a new film project called 4 mm. She posts about ME/CFS, Long-Covid, EDS, connective tissue disorders, CCI, MCAS, and more.

https://twitter.com/jenbrea

Jessica out of the closet: Jessica Kellgren-Fozard is a British YouTuber and influencer with EDS, among other conditions. They are also deaf and identifies as LGBTQ+. They share experiences with chronic illness, as well as fashion, beauty, and lifestyle content on their channels.

https://www.instagram.com/jessicaoutofthecloset/

Jules Machias: Jules Machias is a queer author who recently published a middle-grade fiction book Fight + Flight featuring a character with EDS. Chronic Pain Partners interviewed Jules on their EDS journey and motivation to write their book.

https://www.instagram.com/jules.machias/

Karina Sturm: Karina Sturm is a journalist from Germany living with EDS and comorbid conditions, focusing on representing people with disabilities in media as well as sharing resources about EDS and its comorbidities as part of the Chronic Pain Partners media team.

https://www.instagram.com/karina.sturm/

Lisa Jamison: Lisa Jamison is a pharmacist with EDS, focusing on nutritional medicine.

https://twitter.com/LoveInYourTummy

Marcia Brock: Marcia Brock is an author with EDS, but you may know her through her podcast EDS Unplugged.

https://www.instagram.com/marcia_brock/

Meghanor: Meghan O’Rourke is an American author of The Invisible Kingdom, in which she shares her journey through America’s healthcare system when living with EDS and other invisible conditions. Chronic Pain Partners has interviewed Meghan here.

https://www.instagram.com/meghanor/

Mitch Martow: Mitch Martow is an EDS advocate from Toronto, Canada. Martow is best known for being the focus of the 2021 released Canadian EDS documentary Bend or Break. Chronic Pain Partners interviewed Mitch here.

https://www.instagram.com/mitchmartow/

OhTwist: Jan Groh is an advocate sharing the most recent scientific knowledge on EDS on her blog and Twitter channel Oh TWIST! focusing on the connection between EDS and autism.

https://twitter.com/H2OhTwist

Positively Chronic Travels: Kate Kozary shares tips and resources for life and travel with chronic illness and disability, mostly related to hEDS, PoTS, Fibromyalgia, MCAS, and migraine.

https://www.instagram.com/positivelychronictravels/

Rebecca Yarros: Rebecca Yarros is the author of Fourth Wing, a bestselling fantasy book featuring a character with Ehlers-Danlos syndrome.

https://www.instagram.com/rebeccayarros/

Roll with Ru: Ru is an award-winning queer disabled activist & lover of everything pink, according to their Insta profile.

https://www.instagram.com/rollwithru

Sabeeha Malek: Sabeeha Malek is a PhD student studying cell biomechanics & collagen/ECM changes in EDS/HSD

https://twitter.com/SabeehaMalek

S Blitshteyn MD, FAAN, Dysautonomia Clinic: Dr. Blitshteyn is a neurologist and the director of Dysautonomia Clinic, as well as a Clinical Associate Professor at the University at Buffalo.

https://twitter.com/dysclinic

Stickmancomms: Hannah Ensor is a British illustrator who has EDS and creates artwork and merchandise related to chronic illness and disability. You may know Hannah’s work under Stickman Communication.

https://www.instagram.com/stickmancomms/

The Chronic Icon: Jessica Cummin is an artist and “just another mad cripfluencer™️ and jewess with Audhd and no bladder,” according to her Insta profile.

https://www.instagram.com/thechroniciconic/

Tinydotz: Nthabeleng Ramoeli is a rare disease advocate in Lesotho and lives with Ehlers-Danlos syndromes and many other comorbid conditions. Chronic Pain Partners has interviewed Nthabeleng on her EDS journey and why she established an NGO for rare disease patients.

https://www.instagram.com/tinydotz/

The Traveling Halo of Hope: Megan King shares her EDS journey leading to 38 surgeries, including a complete spinal fusion, on Instagram.

https://www.instagram.com/thetravelinghaloofhope/

Watercolor me impressed: Christina Doherty is a YouTuber who has EDS and shares her experiences with the condition on her channel. She is also very active on Instagram.

https://www.instagram.com/watercolor_me_impressed/

Zebra Rea: Rea identifies as a zebra who has Ehlers-Danlos syndrome and comorbid conditions as well as narcolepsy. Rea is sharing their journey on Instagram.

https://www.instagram.com/zebra.rae/

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