Rebekah, age 51, Missouri
My title of Professional Dancer was exchanged for 'professional patient’ once I lost my footing on a leap. That was the beginning of a 30 year struggle for answers.
I pushed myself along for decades. A sprain here. A sprain there. Broken limbs, dislocations that pop right back. Rest a few days and I'm back on stage. Sometimes I didn't even rest. I spent countless hours, days and cities in the E.R. or seeing one doctor, specialist or therapist. And then there were hundreds of tests. I had come to believe what they all said. That it was all in my head, I was too clumsy and I just needed to toughen up.
Then we were in an automobile accident in 2013. Our car flipped four times down an eighty foot ravene, throwing both my youngest son (15 at the time) and I out the side windows. This accident changed the course of my life. A domino effect of injuries and illnesses occurred.
Finally, two years ago, I was diagnosed with Postural Tachycardia Syndrome, Hypermobile Ehlers-Danlos Syndrome, Bertolotti's Syndrome and Median Arcuate Ligament Syndrome. Shortly after, we found out I also have Chiari Malformation. There have been so many doctors, specialists, surgeries and tests. But it wasn't until we moved to Dallas and met a leading Dysautonomia specialist that we were ultimately given the answers we needed.
The last year, in particular, has been rough. One specialist after another and six surgeries. After back surgery in 2019, I began physical therapy in November. There were a few setbacks at first and I honestly started to accept the fact that I may not walk again. It felt as if I would never be strong enough. However, I can proudly say that now, after 8 months, I am finally strong enough to get on the stationary bike. I may be slow but I am moving forward.
I've endured 10 surgeries due to EDS. But my back surgery in 2019 was what instilled a passion in me to elevate EDS awareness and advocate. Due to limited resources, I started writing online about my journey in the hopes to connect with others. I wanted to be a small part of the solution. It's classified as rare but it really isn't. No two cases of EDS are the same. This can make diagnosis difficult because there's no "face" to EDS. We are all unique individuals with our own unique presentation of symptoms. I love making connections and taking my experiences to potentially help a person get help faster than I did. I love that I am still learning from so many as well. When I'm having days where I'm not doing so well, I feel accomplished by going online and encouraging others with some positivity, quotes or by sharing knowledge.
It’s difficult having an invisible illness – being in a place where nobody can ever tell how it impacts you on a daily basis, yet it affects every single decision you make in your life. I’ve come to realize that I consider it to be a blessing, and a curse at the same time. Now that I have moved back to the smaller community once again, I have been stricken with the horrible challenge of finding medical professionals who have knowledge of my illnesses, let alone treatment. There are zero support groups within a 200 mile radius. We need awareness here. Locally and statewide. I know there are children out there, adults as well, who will benefit from access to specialists and treatment centers and more. Let's Raise Strong Awareness!