Embarking on My EDS Journey: A Rollercoaster of Discovery
Hey there, fellow travelers on life's winding path! Today, I want to share a deeply personal journey that has shaped my life in profound ways – my journey with Ehlers-Danlos Syndrome (EDS). It's a journey filled with twists, turns, and lessons about resilience, self-acceptance, and the power of knowledge.
The Start of It All: A Dance with Uncertainty
I can understand your concerns; it's never easy to come to terms with a diagnosis, especially when you're still young and all eyes are on you. I vividly recall the day I first embraced my cane, an accessory often associated with a much older age than mine. I looked 19, and yet, my journey with EDS had already begun.
Age of Discovery: A diagnosis can be both a blessing and a burden. On one hand, it brings clarity to the multitude of pains, feelings, subluxations, dislocations, and other mysterious symptoms. My journey with EDS began in the 6th grade when I started experiencing health issues. At first, doctors suspected leukemia, but it turned out to be mono. Little did I know that EDS would become the common thread connecting all my seemingly unrelated health struggles.
The Dance with the Unknown
As a dancer, many attributed my ailments to my passion. However, my symptoms intensified after mono, leading to two years of physical therapy for multiple herniated discs in my spine, endometriosis, severe periods, pre-cancerous cells, ovarian cysts, major knee problems, and unrelenting pain and spasms from my knees to my neck, topped with chronic migraines. No one connected the dots to EDS, even though it was the missing link.
Fast Forward: By the age of 19, I had endured more physical therapy, three knee surgeries (two for stabilizing kneecaps and one for benign bone tumor removal), a laparoscopy for endometriosis cysts and cells, and a career that had once soared high but was now grounded due to my deteriorating health.
The Journey of Self-Discovery
I wish I had known about my EDS diagnosis earlier. It might have spared me some pain and heartache. Knowledge is power, and a diagnosis can be a guiding light in the darkness of uncertainty. Perhaps I wouldn't have needed a cane so soon, or maybe the path would have been the same, given the medications I required for endometriosis.
The Healing Odyssey: As I journeyed through my twenties, my body went through forced menopause, countless medications, and treatments in pursuit of pain relief. My body had its own agenda, often crashing without warning, making even the simplest tasks, like going to the bathroom, utterly exhausting.
Embracing Awareness and the Power of Knowledge
Looking back, I danced and cheered competitively for 18 years of my life, cherishing every moment despite the hypertensions and dislocations. But if I had known about my EDS earlier, my journey might have taken a different course. More preventive care, annual physical therapy, and symptom management could have been part of my life, reducing the need for mobility aids so early and mitigating the impact of medications.
A Word to Fellow Parents: If there's one thing I'd like to share with parents, it's this: Knowledge is a gift. Knowing about your child's condition can make all the difference in their journey. Even if it's a family secret, having a support system at home can provide comfort and understanding. Not all doctors get it right. Advocate for your child and research the care team and information they share.
As I continue my journey with EDS, I've learned that acceptance, resilience, and raising awareness are powerful tools. My hope is that by sharing my story, I can inspire and support others facing their own health challenges. I have made substantial improvements since 2018 and I cannot wait to have you on the journey with me.
Remember, life's journey is unpredictable, but with each step, we grow stronger and wiser. 💪
