Community Voices

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Community Voices

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 Stories

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.

Read community stories

Share your story

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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.

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My Therapy

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.

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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.

EDSInfo.Wordpress.com

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

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

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.

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People You Should Know with Bill Coon

The People You Should Know podcast with Bill Coon spotlights an individual who deserves to be spotlighted for their advocacy work or philanthropy. This episode features Megan King. Megan is an advocate for Ehlers-Danlos Syndrome (EDS). Megan was diagnosed with EDS when she was in high school. For the better portion of the past decade, Megan has been chronicling her battle online in an attempt to raise EDS awareness, as EDS is a condition that is underrepresented in society and lacks resources within the medical community. 

Click the picture to the left to listen to this episode.

Rare Disease Connection

Rare Disease Connection, and additional resources on RareDisease.com and YourDNA.com, brings together the people whose expertise can explain what you’re facing. From diagnosis, to prognosis, to treatment options, all the way to questions like “Who do I talk to? Where are the people who’ve been through this before?”. We have the answers, direct from the experts and those who’ve faced your disease. The linked episode spotlights Ehlers-Danlos syndrome, they cover EDS diagnosis, new treatment options, and how to connect with the EDS community. Click the image to listen.

The Spoonie Struggle

The Spoonie Struggle is a discussion and interview-based podcast that aims to give individuals a voice, so they can share their honest stories about living with an invisible hard-to-diagnose chronic medical illness in an effort to relate, motivate, empower, advocate, and educate! We also interview medical professionals in an effort to provide well-researched, well-vetted, accurate, and up-to-date research and information on these diagnoses to help individuals and to educate the medical community.
Jessica Temple is a board certified adult clinical neuropsychologist, chronic illness experiencer with Ehlers Danlos Syndrome, and creator and host of the new podcast The Spoonie Struggle. She aims to give individuals a voice, in an effort to relate, motivate, empower, advocate, and educate!

Click the picture to the left to listen to this podcast

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.

Kitty Colbert

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.

 

Poppy OA

Poppy has a YouTube channel and blog which she uses to speak about living with Kyphoscoliotic EDS (kEDS), her travels, and insights into how things going on in the world. She finds writing therapeutic and sharing those writing with the world. Watch Poppy’s video on her disability to the left, or read her blog here.

Footprints, No Boundaries

Footprints No Boundaries is a YouTube channel created by Shruti Chopra, designed to inform, educate, motivate, and inspire those who deal with medical and non-medical challenges in life. She suffers from EDS, chronic fatigue, MCAS, endometriosis, and adenomyosis and shares her experience of living with these conditions. 

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.

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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. 

Strength/Flexibility/Health/EDS

The 1st and ONLY digital wellness magazine for living well with Ehlers-Danlos syndrome (EDS), other hypermobility syndromes, and related conditions. is a website and blog about life as an entrepreneur, author, health educator, health/wellness/life coach, medical device sales business owner, health blogger, medical writer, wife, mom of three, EDNF Helpline Volunteer, positive thinker, photography lover, traveler and all things fitness and health related, all while living with Ehlers-Danlos Syndrome (EDS).

Click the image to the right to read more.

Together, We Aren’t Rare! Let’s Talk About Ehlers-Danlos Syndrome

An article by Karina Sturum, containing stories from a variety of individuals living with EDS discussing topics such as racial bias, finances, gender, disability, and barriers to care. Click the image to the left to read more.

Don’t Pathologize the Emotional Pain Caused by my Chronic Illness

TW – Contains Discussion of Self-Harm
Sarah has personal experience of a long and difficult diagnostic journey, spending 15 years in the mental health system which only added to not being believed about her debilitating physical symptoms.  Childhood and medical trauma mixed with lack of diagnosis and no appropriate medical management of physical symptoms led to significant spiraling downwards of functioning and quality of life. In this article Sarah advocates a paradigm shift from “mental health” to “mental wellness” and discusses how chronic conditions have an impact on physical and psychological functioning. 

Click the image to the right to read more. 

We Are Visible

“But you don’t look sick!”

‘We Are Visible’ gives a voice to a neglected community: People living with invisible disabilities specifically in the context of the rare condition Ehlers-Danlos syndrome (EDS). It showcases the challenges this community faces due to misconceptions surrounding invisibly disabled people and conveys the strength and resilience with which this community fights to become seen. Our condition might be invisible, but we are not!

Issues With My Tissues

In 2011 at the age of 31, despite having barely walked more than three miles at a time before in her life due to Ehlers-Danlos syndrome, Lara Bloom decided to try and become the first person with EDS to walk the London Marathon. The documentary follows Lara’s journey and features interviews with medical professionals, families with EDS and individuals who have suffered from misdiagnosis.

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 breakingdownbarriers@ehlers-danlos.com or complete the submission form below.