Archive for the ‘Invisible Disabilities’ Category

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Unaccommodating Accommodations

Posted on February 26, 2023

I want to be okay. Some days I am. But some days, it feels like my words slosh about disjointed. My eyelids are heavy shades that won’t stay open. Pain suffuses every joint in my body, and the throbbing in my head makes it impossible to tolerate light or noise. Day-to-day is unpredictable, sometimes moment […]

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Surgery Prep: Meeting Your EDS Hospital Stay Needs

Posted on February 22, 2023

How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS) This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy. People with Ehlers-Danlos syndrome (EDS) often need surgery […]

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Advocate Nthabeleng Ramoeli on her EDS journey, EDS care in Lesotho, and why she established an NGO to help all rare disease patients

Posted on December 23, 2022

For our January newsletter, journalist Karina Sturm spoke with rare disease advocate Nthabeleng Ramoeli. Ramoeli was born in Lesotho, a country encircled by South Africa, and lives with Ehlers-Danlos syndromes and many other comorbid conditions. The young woman relentlessly fights for improved access to health care for rare disease patients in her home country and […]

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Mitch Martow on his EDS journey and the documentary Bend or Break

Posted on December 22, 2022

For our January Chronic Pain Partners Post, journalist Karina Sturm spoke with Mitch Martow, an EDS advocate from Toronto, Canada. Martow is best known for being the focus of the 2021 released Canadian EDS documentary Bend or Break. In this interview, you’ll get close to Martow and his humorous side while he shares how he […]

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The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason

Posted on December 22, 2022

Many people with chronic illnesses, like Ehlers-Danlos syndrome (EDS) or other disabling or deteriorating conditions, are often afraid of the possibility of “ending up in a wheelchair.” It is a real fear. But what if we changed our thinking? Wheelchairs provide freedom; they aren’t the end, but empowering and enabling for the user. And sometimes, […]

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Kaleena Deshawn on challenges as a person of color with EDS, Fibromyalgia and ME/CFS

Posted on June 22, 2022

For our July newsletter, the Chronic Pain Partners media team interviewed a group of people to highlight the diversity of our community and emphasize the challenges that arise when a person belongs to more than one minority. In this interview, journalist Jackie Saa speaks with Kaleena Deshawn, a Boston-based intermedia artist, makeup enthusiast, and zebra […]

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“Grey’s Anatomy” Ehlers-Danlos Episode

Posted on October 24, 2016

BY Kaytlyn Leslie of the Tribune News. Watch this video about the EDS patient who inspired the Ehlers-Danlos portrayal in the Oct. 13 episode of the TV show “Grey’s Anatomy”. Olivia Herzoff, 19, has Ehlers-Danlos syndrome, a rare connective tissue disorder that gives her constant pain and a range of related medical issues. An Oct. […]

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People With Invisible Disabilities, including Ehlers-Danlos, Need More Understanding

Posted on April 12, 2015

NPR radio ran a segment on invisible disabilities to commemorate the 25th anniversary of the Americans with Disabilities Act (ADA).  While progress has been made, much still needs to be done.  Click here for the original broadcast on NPR radio. Join the efforts to spread awareness of ADA on its July 26th anniversary. Resources include this Tool Kit, a project of the ADA […]

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