Raise Awareness for Ehlers-Danlos Syndrome!

Join me in supporting real change. The Ehlers-Danlos Society has been a leader in innovation and research for EDS and a beacon of hope for so many individuals. Please donate to help them continue their mission!

I am aware that times are tough right now. If you would have told us in January that we’d be facing a global pandemic this year and be forced into quarantine, I think we all would have had a good laugh. Despite the current situation, I am asking that you help me by supporting the Ehlers-Danlos Society so they can continue their research into this disorder and develop new treatment methods.

My journey with Ehlers-Danlos Syndrome began on September 30th, 2007. Of course, I had EDS all of my life but it reared its ugly head on that September day. I was a competitive dancer, competitive cheerleader, and president of my student body. My parents would often joke and call me the “Energizer Bunny” because I just kept going and going and going. Until one day, I couldn’t go anymore.

On September 30th I had dance rehearsal for 4 hours and then went to a local fundraiser to volunteer. I came home with a headache that afternoon, which wasn’t too out of the ordinary for me. I got the occasional migraine, so I went to bed and figured I would feel better in the morning. However, this was not the case. After 2 days of the worst headache of my life we went to my doctor. They sent us to the ER and treated me for migraine and sent me home. Two days later my headache still persisted and now I could barely move my neck. Back to the ER we went with a case of suspected meningitis. All the signs and symptoms were pointing towards meningitis...until they did the spinal tap.

I was nervous for the spinal tap. I was just 13 at the time and hadn’t ever really had any major medical problems. They allow my mom to stay in the room and she holds my hand as they try to retrieve some spinal fluid. They stick the needle in...nothing. That’s strange. Maybe they just missed? They did it again...nothing. They could see the spinal fluid come to the hub of the needle but could not get any to drain. I was then locked and loaded on my gurney and headed for an isolation room in the children’s hospital for suspected meningitis.

They tried 4 times to get spinal fluid over the course of 2 days. In the meantime, I couldn’t lift my head without vomiting. They were having trouble getting IV’s on an otherwise healthy 13 year old. There were many debates and theories as to what was wrong with me. Some said it was meningitis. Some said my MRI showed Chiari Malformation and tethered cord (fun words that we’ll add to our vocabulary later). My favorite answers were that I was just under too much stress, I was seeking attention, I secretly used IV drugs and that’s why they couldn’t maintain IV access...but the worst was when they accused my mother of making me sick. After a week of no answers and a continual decline my mom called her co-worker and friend who happened to be the chair of neurosurgery at our hospital. He pulled up my scans and just said “Tell me the story.”

So my mother went through my list of symptoms, how they all began, the tests I had undergone, and the list of differential diagnoses. “This is easy. She has a spinal fluid leak. She has less than 50% of her spinal fluid.” Finally! An answer that made sense! They performed blood patch after blood patch with no success. After a few months of being in and out of the hospital, they decided to operate.

About a week before my surgery an anesthesiology resident stopped my mom in the cafeteria and asked, “When we’re called up to get an IV on your daughter, does she bruise in a line?” My mom replied, “I don’t know, but let’s go check.” I had become anesthesiology’s favorite pin cushion at this point. I could never maintain an IV site for more than a day or two. They had stuck me 13 times in one day trying to get access, so they had a lot of options to choose from when assessing my bruising pattern. They pulled off the bandage and, what do you know, a bruise in a line. The anesthesiologist said, “I think your daughter has a connective tissue disorder. I’m not sure which one, but it would explain why a healthy 13-year-old developed a severe spinal fluid leak and why we have such a difficult time getting IV access.”

My mom started to do some research based on this anesthesiologist’s hunch and came across Ehlers-Danlos Syndrome. Genetics was consulted and they agreed that this was a potential problem. I underwent testing and was diagnosed with Classical Ehlers-Danlos Shndrome (Ehlers-Danlos Syndrome Type II back then). I was later assessed by Dr. Francomano, the EDS guru, and given the diagnosis of Hypermobile Ehlers-Danlos Syndrome. This would just be the beginning of a long, uphill battle that I would face with Ehlers-Danlos Syndrome. I’ve now had 27 surgeries, most of them neurosurgeries, 16 blood patches, 4 PICC lines, 2 ports. It’s easy to get lost in those numbers. But over the past 13 years I’ve also had hundreds of memories, too many ”spoonie” friends to count, and dozens of opportunities to raise awareness for a condition that greatly impacts my life. And I’m not going to stop advocating for this syndrome until we find a cure