Connect my tissues! Love Your Local Zebra- EDS Empowerment
Donation protected
Hello dear reader, my name is Angie.
The Event: Imagine training for 7 years to run a 5k! That's me, Angie, running with EDS (Ehler's Danlos Syndrome) and ready to tackle the Rattlesnake Mountain 5k!
Why a 5k? I love running, I always have. I first started when I was 8 years old. I could never run as well or as far as anyone else, which I understand now. But I can run again, and I want to run this race in honor of all EDS athletes who want to run but can't. I will do this race with my normal "running" get-up, a neck brace, sacral lock, running belt with electrolytes, wipes and catheter, compression top to bottom, KT tape on both knees, and hiking poles. This isn't the marathon I dreamed of, but at one point I thought I'd never run again. This 5k is my little miracle.
The Condition: This is my story, just one of the thousands of stories of people with Ehlers-Danlos Syndrome (EDS). According to Medscape, this genetic disorder affects 1 in 5,000 people. It affects multiple organ systems as it is a disorder of the connective tissue that holds us together. We don't make collagen the way we should, and it wreaks havoc on quality of life and function. Our mascot is the Zebra because we are true medical Zebras. (In medical school, residents are taught to "look for the horse not the zebra" which makes it very hard for us to get the care we need).
The Point: With this fundraiser, I hope to raise awareness for us. First, I am raising 50% of the money for others with EDS in Northern Nevada who cannot afford their medical expenses, including much-needed physical therapy and mobility aids. I am working with local foundations and nonprofits to build a fund for EDS patients in Nevada. (Unfortunately, because of the nature of EDS, we need a LOT of healthcare, and insurance doesn't cover a lot of the specialists we see, braces we need, medications, etc.) Second, I'm aiming to use the other 50% to afford a procedure that will help me to be more functional in my life and make my dreams come true, like adopting a child, increasing work hours so that I can help others more, and continuing to become some piece of the athlete I once was.
My story: My dreams are different than they used to be. Once upon a time, I planned and dreamed to run a marathon, hike the PCT, have at least 2 babies, work in the NICU, and become a yoga instructor. But my long misdiagnosed medical conditions had other plans. I remember standing at the stove one day at the age of 30. I was icing my knees every night. My back pain was a monster that wouldn't stop. My bladder pain was so bad it regularly flooded me with anxiety, eyes watering from pain while I tried to work. I was getting blinding headaches, and everything hurt. And standing there, I could feel my shoulder bone rattling around in the socket as I scrambled my eggs in the pan. This was not my injured shoulder, which was taking months longer to heal than it should have. I thought, something's wrong with me. I can't imagine I live past 50 at this rate. This is unsustainable.
I didn't know it at the time, but I had a tethered spinal cord and Hypermobile Ehlers-Danlos Syndrome. Because of the progression of these conditions and a surgeon who hurt more than helped, by age 33 I lost the ability to walk, work, even hold things. Things got worse and worse and I spent most of my time in bed. I found a good surgeon for my tethered cord in Rhode Island, but not before I was dependent on crutches and a wheelchair to get around. In 2019, after my two spinal cord release surgeries, I found myself questioning if I would ever function again. I didn't know why I kept almost blacking out or popping my joints in and out, why I couldn't get stronger, why I had such constant, terrible crushing fatigue.
It took me two more years of fighting and searching before I was finally diagnosed with Hypermobile Ehlers-Danlos Syndrome as well as Cranio-Cervical Instability (a condition that is a result of my EDS and causes my skull to push against my brainstem because my ligaments don't hold it in place like they should. The symptoms are awful). Everything finally made sense and I was finally able to do the right research and seek the right treatments... which has been painstakingly slow and grueling work, and incredibly expensive. I spend all my extra money on my meds, supplements, therapies, and procedures. I've spent the past 6 years working my way out of a wheelchair and onto the trail, increasing my walking at first by 0.05-0.1 miles every 2 weeks to prevent a "crash." I've been in physical therapy for 8 straight years. It took me 3 years to return to some form of work, and the past 3 years painstakingly training and getting stronger to be able to do this race, do life. I work part-time, I take naps to get through my workday. I use KT tape, strengthening exercises daily, multiple medications and supplements, braces on my hips, neck, back, and whichever limb is currently misbehaving when something pops out of joint inadvertently. I train specifically and carefully: if I'm not incredibly cautious with my body and energy, I land myself into flare-ups lasting days. I don't have illusions of ever being "normal," but I've come a long way, and I have full hopes that I have a long way to go before I reach my full potential for healing. And I hope to help others heal, too.
So what's the procedure I want to get? At this point the most debilitating piece of my condition is the Cranio-Cervical Instability. There is a world renowned doctor who has developed the PICL procedure in order to tighten the ligaments that hold my skull onto my neck. As with many of the most promising treatments for us medical Zebras, insurance doesn't cover it, and it's $15,000. I've done everything else I can to get better, and I'm very hopeful that this will be life-changing. Stay tuned! I will be raising money until my procedure date, and plan to run another race once I'm healed. I hope to ditch the neck brace for a good, long time.
Resources and Further Information:
Fundraising team: Fundraiser Team (3)
Angie Jackson
Organizer
Reno, NV
Christa Cooper
Team member
Go Ducks
Team member
Natalie Brock
Team member