Breaking Down Barriers

Many around the world face a diagnostic odyssey: years, sometimes lifetimes, fighting for recognition, diagnosis, and care. The Ehlers-Danlos Society is working towards a time when geography and wealth no longer determine your quality of life.

Education is needed to advance early diagnosis and intervention—and post-diagnosis, patients urgently need support and guidance. We want to give hope to all those living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders. To do this effectively, we need change.

Many face barriers to diagnosis and care: not being believed, denied access to treatment, told they are too young or too old to be dealing with the symptoms they have. There are many different barriers that our community face globally, and in 2020 we want to work together to break down these barriers, and to open up the conversation around what our community is experiencing.

Breaking Down Barriers Coalition

Disparities in healthcare are very real. We do not accept inequality or inequity, and we continue to strive in our mission to give hope to and improve the lives of people affected by EDS and HSD. We recognize our community’s experiences of inequality when it comes to race, gender, sexuality, age, body shape, mental health, disability, and economic situation, and want to use our platforms to highlight these narratives.

We are developing a Breaking Down Barriers Coalition, bringing together representation from across our community that represents different races, countries, genders, sexualities, age groups, body types, disabilities, types of EDS and HSD, and all those who feel that they do not have the care they need because of a barrier. We want to be led by the community on what we can do to progress change, to develop resources, programs, and research. The Coalition will address inequalities, and help inform Society programming and advocacy efforts.

Initially, we are looking at the racial bias within the research literature. Going forward, we will work with the coalition and researchers to formulate inclusive research priorities. We ask that if you feel you are willing to share your experiences, and the barriers that you have faced in your EDS and HSD journey, and would like to be an advocate for change, that you take the time to complete our Breaking Down Barriers Coalition Application Form. We have listened to the passion and desire for change in our community and believe that this Coalition can start the discussions needed to pave the way for better access to care for all. We will be reaching out to partner with other organizations to learn from the work they have done in breaking down barriers to progress change. 

 

Click here to view the Terms and Conditions for the Breaking Down Barriers Coalition. 

Get Involved

We want to hear from you, we want to share your voice. Tell us what barriers you have faced along your diagnosis journey, and what barriers you continue to face when trying to access treatment, healthcare, and recognition. Share your story, and download the Breaking Down Barriers poster and share on social media with the hashtag #BreakingDownBarriers

CW: Contains mention of suicide I always had a slightly odd gait as a kid, was fidgety, and always uncomfortable sitting in chairs while in classrooms. Labeled as a hypochondriac by my father’s family and told how chubby, weak, soft, and attention-seeking I was; regardless of having 2 sets of tubes in my ears and […]
Hello all, my name is Faith. I am 27 years old, my diagnosis journey began in 2017. Feb 13, 2017, to be exact. That morning I was awakened from my sleep with really sharp pains in my stomach. I thought it was just the normal gastrointestinal issues I normally live with, being that I was […]
Hello, my lovelies! My name is Lori, I’m 19, and I’m the founder of and writer at the blog ‘From Bud to Bloom’. It is all about my journey towards self-love and self-fulfillment as someone with chronic illness and mental health problems – I also happen to battle with hEDS, PoTS, ME, scoliosis and hip […]
My greatest barrier with Ehlers-Danlos syndrome has been finding my own voice. Symptoms started as a young child with unbearable leg pain at night. Then, in high school, I began having many gastrointestinal issues. I still wanted to participate on my school’s cross country team; one day while running alone I lost consciousness. Once I […]
I always knew my feet were hypermobile since I was a teenager, but I had no idea about Ehlers-Danlos syndrome until I was 30. By then, my time in the military had worn away my lower extremities.  I had my first foot fusion at 22, but it wasn’t until I developed dysautonomia and postural orthostatic […]
There has been a great deal of talk in the press recently about the TV industry and the toll it takes on your mental health, both on and off-screen, and how the industry would shut down as we know it if all the freelancers walked out. There is an element of my journey that I’d […]
At age 24, I began having severe body pain after having our second child. My family doctor was amazing! After a thorough exam, he referred me to a rheumatologist. In no time, I had a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS).  After listening to my entire history of being a dancer as a child, always […]
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For the time being, my hypermobile Ehlers-Danlos syndrome (hEDS) has me reliant on mobility aids. My hEDS is typically quite invisible. Well, aside from that time my brain swelled and 1/3 of my hair temporarily fell out. Oh EDS comorbidities, you are full of surprises. No worries, I combed it over and it grew back.  […]
For my whole life I struggled with building strength, keeping up with peers, and not understanding why movements look so different when I do them compared to others. As an adult, I now know what Ehlers-Danlos syndrome is: suddenly everything makes sense and the questions have been answered.   When it came to my muscles, they […]
I was diagnosed with hypermobile-Ehlers Danlos syndrome (hEDS), Postural orthostatic Tachycardia syndrome (PoTS), and related comorbidities when I was 20. It represented the culmination of six years of searching for answers to explain my complex symptom presentation and the reason for a lifetime of recurrent pain.  After such a tumultuous diagnostic odyssey, it was also […]
Today, I spent hours on the phone with the pharmacy about a single prescription. This particular prescription has been problematic ever since my doctor first gave it to me. My insurance company has refused to cover it, my pharmacy fights with me every month about it, and I am ashamed to tell people that I […]
In my 30’s I started to develop significant pain in all of my joints, but mostly stemming from my spine. When I got pregnant at 31, I started to have excruciating pain in my back. I went to physical therapy and was told it was normal.  At 36, I had my first spinal surgery, a […]
How many times have you been told you’re crazy? Getting diagnosed with Ehlers-Danlos syndrome is difficult enough, but EDS brings along a bunch of other issues that can make your life hell. Throughout most of my life I was always told nothing was wrong with me when I had an injury. Something would hurt, I […]
In 2018, I started to study in a journalism degree in Edinburgh, Scotland, and immediately knew that I wanted to produce a documentary film for my MA thesis years later. I had never filmed before and didn’t know much about documentary filmmaking, but I just hoped everything would fall into place if I put all […]
For years I have had pain in my joints, especially in my hips, knees, and hands. I struggled with fatigue all my life. Xrays and much blood work were done every year, looking for signs of Arthritis. My fatigue was chalked up to me being a “lazy kid” and then teen, and then my being […]
Finding appropriate healthcare has been a nightmare. Not only do doctors not know about EDS in order to diagnose the disease, they know even less about how to treat the symptoms. My daughter was hospitalized and later diagnosed at the beginning of the opioid crisis (2017). Because of the new rules they “could not treat […]
For years, I was told by my doctors that I was healthy, and I certainly tried to be. I exercised regularly, ate a balanced diet, didn’t smoke, and only drank occasionally. However despite all this, I didn’t feel healthy. For five years, I had been experiencing migraines, weight loss, nerve pain, chronic pain, loss of appetite, fatigue, hair loss, gastrointestinal, urological and […]
I was 19 years old when I was diagnosed with hypermobile Ehlers-Danlos syndrome [hEDS]. This was an extremely difficult period for me as I was also in my second year of university studying for my BA Honours in Early-Childhood Studies. I was fortunate to have a smooth diagnosis; I was examined by a rheumatologist who […]
My daughter’s previous rehabilitation doctor told us that the same program applies to hEDS as to fibromyalgia. “The pain is between the ears. We’re going to fool you and reset your brain. Your brain sends the wrong signals and we will treat that.” Because I did not agree with the rehabilitation doctor, I was almost […]
It has taken a long time for my family to be diagnosed with hypermobility spectrum disorder (HSD). We’ve been told different things by different geneticists, and we have symptoms that aren’t attributed to HSD. One of my brothers, my mother, and myself have also all been diagnosed with Hashimoto’s disease. It proves extremely difficult for […]