Community Voices play a huge role in the advocacy and support, awareness, and education pillars of The Ehlers-Danlos Society’s mission, with every story or resource having the chance to create a ripple effect and impact the lives of others. With this resource hub, we hope to amplify voices from all around the world, to shine a light on how each individual’s experience might differ and what kinds of barriers to care they may be facing.
We will be updating this page with new content or resources that we receive, if you have any content or resources that you want to submit please complete the form below.
Our community stories feature experiences from people from all over the world, with different subtypes of EDS and HSD, covering all topics from diagnostic journeys, coping methods, and highlighting different areas of each person’s experience of living with these conditions. No two zebras have identical stripes just as no two people with EDS or HSD are identical. As a community, we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or hypermobility spectrum disorder.
The ZebraStrong Blog by Jeannie Di Bon
Jeannie Di Bon is a Pilates and rehabilitation teacher whose areas of expertise are rehabilitation from injury and illness, chronic pain management and hypermobility syndrome, and EDS. She posts regular blogs around movement, self-care, and wellness, always from a hypermobility-friendly perspective. Click the image to see all of Jeannie’s past blogs.
Ma Vie De Zèbre
Ma Vie De Zébre is a French blog set up by Annie-Danielle Grenier, who shares her experiences of living with Ehlers-Danlos syndrome. She discusses her view on topics such as isolation, what it is like to have a chronic disease, and shares her ups and downs of living with a chronic illness. Click the picture to read some of Annie-Danielle’s blog entries.
MyTherapy is an app developed to remind you to take your medications. They post regular weekly blogs around different illnesses and have featured Ehlers-Danlos syndromes a number of times. Blog titles discussing EDS include: Twenty-One Going on Fifty – Life with Ehlers-Danlos Syndrome, Ehlers-Danlos Syndrome: A Four Year Fight For Answers, and Living With An Invisible Illness.
Click the image to view the latest blogs from My Therapy.
All Things Endometriosis
All Things Endometriosis is a website where Shruti Chopra shares her experiences of living with endometriosis, hypermobile Ehlers-Danlos syndrome, and other chronic conditions through different mediums such as written blogs and podcasts. She discusses different aspects such as mental health, preparing for doctors appointments, and tips for living with chronic illness.
Click the photo to the right to visit Shruti’s website.
A Purpose in Pain
A Purpose in Pain is a blog written by Samantha DeCosmo, who is a writer living with Ehlers-Danlos syndrome and chronic pain. She started her blog to share her story, and to help others feel less alone by hoping to share experiences that others relate to, and to encourage others to live the best life they can in the midst of challenges.
She covers topics such as personal development, self-care, mental health, and living with chronic illness. Read her blog posts by clicking the picture to the left.
EDS and Chronic Pain News and Info is a growing collection of over 5,000 articles: excerpts of news, research, treatment, tips, and personal stories. The search bar and menu give the option to look at specific topics or resources such as pain and pain management, as well as top posts and most recent posts.
Click the image to the right to visit this website.
Less Flexible is a blog by Madora, focused on living with hypermobile Ehlers-Danlos syndrome, and recovering from being disabled. Visit her blog by clicking the picture to the left.
Beautifully Broken is a personal blog written by Hope, who has lived her entire life with chronic pain but was only recently diagnosed with Ehlers-Danlos syndrome. In her blog, Hope explains more about EDS and how it has shaped her life: “This life is hard and I believe that in order to get through it, we need each other (and God).” Hope’s goal is that others will find some joy, hope, and peace, as they join her on this journey through life.
Click the image to the right to visit Hope’s blog.
Bendy Bodies With the Hypermobility MD
Hypermobility disorders are a frequently missed cause of chronic pain as well as other health problems, including irregular sleep patterns, organ health, mental health, and injury recovery. Linda Bluestein, MD provides an in-depth discussion about the issues faced by individuals with hypermobility disorders and interviews specialists with diverse areas of expertise, most often from a dance or gymnastics perspective. If you want to learn more about hypermobility disorders and how to best improve quality of life, maintain healthy flexibility, and maximize functional outcomes, view all available episodes of this podcast here.
Community Voices – Virtual Summer Conference 2020
As part of The Ehlers-Danlos Society Virtual Summer Conference 2020, we asked people from all over the world in the community to speak and share their stories. They shared their experiences of living with different subtypes of EDS and HSD, their diagnosis journeys, ways they choose to advocate for themselves, and things they find useful for dealing with symptoms or flare-ups.
You can view all of the Community Voice videos using the video player to the left, or by clicking this link.
Lara Bloom EDS and Me VLOG
Join Lara Bloom around the world campaigning, advocating, and raising awareness of chronic, invisible, and rare diseases in her role as President and CEO of The Ehlers-Danlos Society and documenting her journey living with Ehlers-Danlos syndrome.
Watch Lara’s EDS and Me VLOG here.
Catherine (Kitty) uses her YouTube channel as a platform to speak about her experience of living with hypermobile EDS (hEDS), sharing life updates and tips for managing the condition. She also uses her platform to advocate for better healthcare for the Ehlers-Danlos syndromes and hypermobility spectrum disorders in Ireland.
Watch one of her most popular videos here, or visit her channel.
“Did You Know That?” Series
Health can be a perplexing topic for all of us. Unless afflicted with a condition at birth or in early childhood, we typically grow up believing we control our minds and bodies. We jump when we want, we say what comes to mind, we sleep when we’re tired, we laugh when amused, we… well, you get the picture.
Lexi Arnold started life with that same belief but was disabused of the notion at a young age. Her struggles started early and caused mounting physical and mental challenges that affected her quality of life. Treating the physical issues was the easy part (we use the term easy in a very loose sense, as you will find out during the conversation); the mental and emotional weight Lexi carried required more understanding, both for Lexi and her family.
In this episode of Did You Know That?, Lexi talks about the “shadow” she describes in the essay below. We discuss how she broached the subject with her parents, why she decided to be so open about her struggles, and what she’s doing to help others.
The Ehlers-Danlos Society’s eMagazine “Loose Connections“
Loose Connections e-Magazine is our source for original content about, or created by, those with Ehlers-Danlos syndrome (EDS) and the hypermobility spectrum disorder (HSD). Loose Connections also provides current information on medical advances in EDS and updates on the activities of the Society.
Loose Connections is an important vehicle for getting information out to everyone, including the medical community. Anyone can print and share articles with their family, physicians and therapists. To contribute, please take a look at our submission guidelines and submit your original work here.
To view the back issues of Loose Connections, simply click here.
Laura Kiesel – Harvard Health Publishing
Laura Kiesel is a Boston-area freelance writer whose articles and essays have appeared in The Guardian, Salon, Washington Post, The Fix, Vice, Al-Jazeera, The Atlantic, and many others. She is a longtime writer and journalist who lives with EDS. As such, she incorporates her lived experience dealing with this condition and other chronic illnesses in her written work. Laura is currently completing a collection of personal essays. Read Laura’s work.
“The Contortionist” by Kathryn Ann Kingsley
“The Contortionist” is a book series that combines horror and circus, and features a main character living with Ehlers-Danlos syndrome. Kathryn says in an interview that the character isn’t modeled after anyone specifically, but she has chronic pain and fatigue and her best friend has EDS.
Read her full interview with Booktrib by clicking the picture.
Disclaimer: It is important to note that The Ehlers-Danlos Society does not have any ownership or direct financial interest in any of the specific organizations, groups, or individuals listed above. There are no formal listing criteria, and The Ehlers-Danlos Society does not endorse, recommend, or certify any of these individuals. The Ehlers-Danlos Society is not liable for any content published on external platforms, or any changes made to content linked on this page. The Ehlers-Danlos Society aims to review and update content on this page periodically. If you have content or resources that you would like included please email firstname.lastname@example.org or complete the submission form below.