“An aspiring gymnast wasn't able to go forward with the sport she loves due to what is being called an invisible disability. Now, a Houston clinic founded by someone also afflicted with the syndrome is giving patients hope.”

“The longer I live with Ehlers-Danlos, the more rapidly I can feel my body deteriorating, so to see that reflected back on screen so clearly (to me) has taken some great reconciliation with the inevitable.”

“Thea is a wheelchair user and she knew that becoming pregnant would alter her care needs. Further adaptions to her home might be required and as with many rarer conditions like Ehlers-Danlos syndrome, she wasn't sure how complicated pregnancy might become.”

This is a must-read for everyone with a connective tissue disorder and one of the most important documents published on EDS. Jon Rodis shared this with us.

“SSA asked the National Academies of Sciences, Engineering, and Medicine to convene an expert committee that would provide current information regarding the diagnosis, treatment, and prognosis of selected HDCTs, including Marfan syndrome and the Ehlers-Danlos syndromes, and the effect of the disorders and their treatment on functioning. The resulting report, Selected Heritable Disorders of Connective Tissue and Disability, presents the committee's findings and conclusions.”

"Life, for me, was always difficult, but I didn't understand that this wasn't normal for everyone else. Everything was a struggle and a daunting task, but I continued pushing myself like I thought I was supposed to. I pushed through nursing school in my mid-twenties as a single mom, working full-time, going to college full-time, all while taking care of a preschooler."

"One of my favorite coping strategies is part of cognitive behavioral therapy. Write on a three-by-five card or create a list on your phone to write down something that's 100 percent true. Then a person would read it whenever needed."

"I want to share with you how NOT to get freaked out! You can become an educated healthcare consumer in many ways. It is important to first learn how to find credible medical information and I have a few resources and tips on where you can start, and it's not by calling Dr. Google. 

"For the past two years, a group of experts, advocates, and patients have been gathering as an ad hoc committee of the National Academic of Sciences, Engineering, and Medicine (NASM), per the request of the U.S. Social Security Administration (SSA). The culmination of this collaborative and Herculean effort has resulted in a first-of-its-kind publication: 'Selected Heritable Disorders of Connective Tissue and Disability,' a consensus study report. [...] This means members of our community will finally be able to point to a dedicated publication and say, 'Here's what my condition entails, some of the challenges I face, and how I need you to help me.'"

"On this episode, our guest is a fascinating patient advocate who recently participated in a documentary called Bend or Break which documents his patient experience with Ehlers-Danlos Syndrome. Mitch Martow started his blog Bend or Break on 2010 to document his struggle with the condition and filmmakers used his blog to write and produce a documentary about Mitch’s experience which was recently released and is available to watch for free on YouTube."

"Here at Disability Horizon, we recommend 11 of the best disability podcasts you should listen to for advice, support, humour and entertainment."

"Gene variants in collagen-related proteins were the most frequent with ZNF469 and ADAMTSL2 variants most often identified. Joint hypermobility was the most frequent clinical finding. Variants were found in 76 % of patients who had distinct clinical features of a HCTD."

This article is not open access.

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