THE DEFINING DECADE

Posted June 20, 2018

By Amanda P., Ph.D.

My third decade, the roaring twenties, was full of personal and professional accomplishments, with mysterious musculoskeletal and systemic health issues woven throughout. My story is of an athlete’s life stopped in its tracks and then redefined several times. It’s of a successful academic, an emerging global public health leader, and world traveler grounded by unexplained health issues. It’s also a story of triumph, overcoming many obstacles to earn a Ph.D. at 25, becoming a successful professor and researcher, regaining the ability to walk, run, and become competitive at triathlon and swimming after getting both of my ankles reconstructed, and ending the decade with a definitive diagnosis of Ehlers-Danlos syndrome.

My health first significantly worsened in my sophomore year of college when I was frequently sick, fatigued, and had allergy and skin issues. My junior year, I walked on to my university’s track and field team and was elitely trained as an NCAA Division 1 athlete–that’s when my body first felt like it was falling apart, adding joint pains, stiffness, muscle spasms, worsening allergy attacks, and autonomic issues to my symptom list. I spent more than double the time of my teammates in the training room with athletic trainers taping many joints before practices and doing prehab and rehab treatments afterward, yet no red flags went off in their minds. It’s also the year I became a medical zebra, seeing several doctors, including my first visit with a cardiologist, all of whom could not explain why I was having so many issues. At 22, I graduated with a bachelor of science degree with honors and went on to pursue a Ph.D. in exercise physiology on a prestigious fellowship, combining three of my loves, sports, science, and health.

As someone who repeatedly challenges myself to get out of my comfort zone, my next personal challenge was becoming an endurance athlete, despite being a power, strength, and team sports athlete my entire life, where I worked up from running for a few minutes to running all race distances, then up to a full marathon a year later. As soon as I started to excel as a runner, my body fell apart again. Eventually, 8 months of exhausting non-surgical treatments for posterior tibial tendon dysfunction, developing painful bilateral flatfoot deformity, and being labeled as “atypical” by my doctors led to two ankle reconstruction surgeries at 25. I went from running marathons to parking in handicapped parking spots and using mobility devices overnight; however, it didn’t stop me from serving two terms as President of the graduate student body at my university and defending my doctoral dissertation with a walking boot on my 6-week-old reconstructed ankle, ankle brace and tennis shoe on my other few month old reconstructed ankle, with a walker to help me stand for this pivotal moment in my academic career. I also managed to interview for faculty positions between my two surgeries and had final interviews and received job offers the week I had my second ankle reconstructed. Weeks after I defended my doctoral dissertation, officially becoming Dr. Price, I moved back to my home state of North Carolina and began my professional career as a professor of Exercise Physiology.

I spent a few years learning to walk again from scratch after my ankle surgeries and regaining the fitness that I had lost by pursuing the lower impact sports of swimming, cycling, and triathlon. Meanwhile, I was establishing myself professionally in my field, focusing my research on encouraging healthy lifestyle behaviors for chronic disease prevention and management, and building expertise in global public health. Personally, I traveled the world, spending a month on average every summer abroad. During the summer of 2016 (28 years old), I was in Thailand for an international faculty development workshop in public health when my health began to decline again. I was nursing what I thought were shoulder and knee sports injuries from achieving athletic success once again, earning a spot in the 2016 USA Triathlon Age-Group National Championships and swimming at the USA Masters Swimming National Championships a few months prior to my trip to Thailand. Given the numerous “sports injuries” and other health issues that I suffered without overtraining or trauma and near perfect health behaviors, I began to suspect a systemic connective tissue condition, despite the doubts of my medical team.

I had to apply the same determination and perseverance that lead me to accomplish so much, well ahead of my peers, to my medical care, while fighting for an explanation for my life-altering and debilitating symptoms.

This third major health episode brought on many new diagnoses including an inflammatory arthritis (seronegative spondyloarthropathy/ankylosing spondylitis), dysautonomia (orthostatic intolerance/postural orthostatic tachycardia syndrome), gastrointestinal dysfunction (rapid gastric emptying, mixed irritable bowel syndrome, esophageal spasms), multiple sclerosis like neurological difficulties (numerous white matter brain lesions were found), uncovering severe indoor, outdoor, and food allergies, and voice and throat problems (throat disorder, vocal fold scar, muscle tension dysphonia, laryngeal spasms, telangiectasia of vocal fold).

Despite ten years of documented symptoms, two major surgeries, and exhausting sports medicine treatments for never-ending musculoskeletal issues, 31 medical doctors missed the primary diagnosis of a collagen disorder. Lucky number 32 and my third rheumatologist questioned the diagnoses of my prior rheumatologists and took me through the Beighton hypermobility scale. It was then that I learned that many of my joints are hypermobile and far more bendy than they should be, combined with my multi-systemic health issues, leading to a diagnosis of Ehlers-Danlos syndrome. My rheumatologist said plainly, “You have a collagen disorder. It’s genetic. There’s nothing we can do.” Tears streamed down my face as I let go of the last strand of hope that I was desperately holding onto, that this would just be a temporary blip, and that I would resume my active, healthy, and live-out-loud lifestyle that I was accustomed to. I was diagnosed with Ehlers-Danlos syndrome in November 2017, just after my 30th birthday, and just before Thanksgiving. Over the holidays since, I have had ample time to examine my extended family, and have discovered similar symptoms, hypermobile joints, and hyperextensible skin throughout my mom’s side of the family, convincing me that we finally figured out my primary diagnosis. Since then, I have been exploring bracing and splinting options for many of my joints, and mobility devices and assistive technology to help with activities of daily living. I am also working on consolidating my care between a few specialists rather than the expansive medical team I developed during the diagnostic phase of my health journey. I’m still in the weeds of redefining my life with my new Ehlers-Danlos syndrome diagnosis, but am hopeful that I will learn to thrive and adjust to my new normal, now that we understand the underlying cause of my symptoms.

Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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