Tag Archive: awareness

Advocating for Halle began the day she was born

When Halle was born and they placed her on my chest, I immediately knew something was different. As the labor and delivery nurse was wiping her down I remember she said to me, “What’s wrong sweetie? You look worried.” I noticed Halle felt floppier than my first two kids. She also had very large gums,
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Lane's streaming logo, DisabledGooru

How my gaming career helps me to raise awareness for EDS

My name is Lane Cooper. On October 23, 2016, I was stacking firewood with my uncle, when I went home I started urinating blood. I went to the ER and was diagnosed with autosomal dominant polycystic kidney disease (ADPKD), which started my medical decline.  A few months later I started having a lot of pain
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Sophia wears a red dress and is standing in front of a large hedge. She has a red bow on her head and is holding some red tulle

Finally having a name for my issues gave me so much relief

Ever since I was young, I was always “different”. I amused my friends and adults by contorting my body into weird shapes. The hyperextension in my arms, abnormally long fingers, and height, in particular, were things that people would often comment on. Starting around the time I was about 12 or 13, I started having
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vanessa f story

I’m newly diagnosed with EDS

After decades of dealing with quirky, what I thought were unrelated, health issues I was finally referred to a specialist in Boston. Last month, after a thorough evaluation and review of my history, my geneticist diagnosed me with a connective tissue disorder known as Ehlers-Danlos syndrome (EDS). Not only does this diagnosis account for the
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Abby sits in her adaptive racing wheelchair on the track.

Raising awareness for the chronic illness I HAVE was truly amazing

Hey, y’all! I’m Abby. I’m a senior in college and will graduate this December with a Bachelors’s degree in Green and Sustainable Business Management. I’m an adaptive athlete and do lots of activities including wheelchair basketball, wheelchair track/road racing, rock climbing, yoga, etc, but track has my heart. I started experiencing symptoms as early as
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Angie wears a black dress and red shoes, and is surrounded by birthday decorations, glitter, and on the floor sits a zebra ball!

I had to heed my own advice and stop hiding my conditions

My life has been nothing short of exhausting. There’s nothing like a life interrupted to gain perspective.  Having grown up with a brother who suffers from quadriplegia and profound retardation as a result of Cerebral Palsy and severe intellectual impairment, I became grounded very young and was raised to never take anything for granted. However;
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Marina takes a selfie wearing a Society tshirt in black with a white zebra. Grass and trees form a backdrop.

One story, one action, one change at a time

I come to you today as a patient expert, disability justice activist, and advocate.   Advocacy and activism is work that many people find themselves doing as a direct result of experiences they’ve had in their lives or been part of through the lives of those close to them. While not always the case, I have
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Sydney smiles into the camera wearing her neck brace

EDS has not broken my spirit

There are so many times where I’ve been to a doctor’s appointment, emergency room, etc. and the physician uttered the phrase I dread the most, “There’s nothing we can do. You are too medically complex.” It’s disheartening when the people who are supposed to help you, can’t. When you are told this news by a
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Barbara sits in front of her wheelchair, with a dog sat in her wheelchair, and a horse stood on a block behind her

My life finally started after diagnosis

It took almost 24 years for me to be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). For 24 years I was neglected by my medical professionals. When I finally got diagnosed, I was not sad, it came like a blessing to me. I felt a big relief because I was seen, heard, and believed. I was
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