My names Ryann, I’m 27 years old and was born with Ehlers-Danlos Syndrome (EDS) and Dysautonomia. On top of my passion for disability advocacy, I’m also a Registered Nurse (RN). I worked in Emergency Medicine in different roles for 11 years, before EDS landed me in a wheelchair, and I found a less physically taxing job as a RN Case Manager. I adore my job because I get to advocate for my patients’ needs just as my own Case Managers have done for me time and time again.
When I’m not at the hospital you might find me at the gym working out, at wheelchair basketball practice (shameless plus for my team, @RoanokeStarsWCBB), or cheesing in front of a camera somewhere. I have recently set out on a mission to show that disabled bodies are beautiful and sexy and need to be seen more in the media! So any photographers out there that would like to help me on this mission, hit me up!
I was born with my disabilities so….27 years? Or maybe more like 10 years since that’s how long it’s been since I found out that my pain had a reason and a name!
When I was diagnosed I had never ever heard of Ehlers-Danlos Syndrome. Smart phones were barely a thing and there was certainly no Instagram. The online EDS communities were….lacking to say the least. The first doctor that mentioned EDS said, “Well, you”ll probably be wheelchair bound by 20”. To hear that as a 17 year old in high school and then to have no one to compare to was…well it was awful to say the least. So my goal is not only to spread awareness about EDS, but to be the person I needed to look up to when I was diagnosed. I like to use my background as a medical practitioner to help other EDS and chronic illness warriors through their journeys since I have been on both sides.
I reside in Roanoke, Virginia, in the United States.
Roanoke and the surrounding areas are fairly rural, but we do have a larger metropolitan downtown. Other than some buildings being older and thus not being super ADA compliant, most business owners are very accommodating. Gotta love that good old southern hospitality 🙂
If the warrior was more ambulatory, there are SO many great hiking spots around here, as the Roanoke Valley is surrounded by the Blue Ridge Mountains. I have heard there are several accessible hiking spots as well, but, as I’m not a big hiker, I can’t speak to it. I would recommend checking out our downtown. Lots of yummy restaurants and fun night life!
Hmm….probably Hawaii to visit my best friend because I miss her terribly and I would LOVE to see the Islands or Barcelona. I adore the Spanish language and culture and my husband loves that city and I would like to have him show me around.
New York City!!! If you don’t mind the cold, there is nowhere more gorgeous than NYC at Christmas time.
DO IT! Don’t let your fear of somewhere being unaccessible stop you from going. Prepare as much as you can. Do as much research as you can, and bring an able bodied friend to help you out if things get hairy. I am guilty of doing this myself and I have missed out on amazing opportunities because I wasn’t yet comfortable advocating for myself and my needs. If you can do that, you can get anywhere.
Probably people seeing my wheelchair when I’m out and about and like grabbing their families and making them walk the other way. I’m disabled, I’m not contagious!
That EDS is not just party tricks and stretchy skin. EDS is a long term debilitating disorder that affects absolutely every aspect of the lives of people affected by it. There needs to be more education about EDS and other rare conditions in the medical field as well as in mainstream society.
Oh! And just because I can kind of walk doesn’t mean I don’t need my wheelchair. My wheelchair gives me back the independence that I’ve been lacking, and let’s me continue to be able to work!