Advocacy became my biggest lifeline during my diagnosis journey

Posted May 22, 2020

Kaily's story

TW: Contains mention of suicide.

For years, the struggle to find the words to raise awareness for my genetic condition, vascular Ehlers-Danlos syndrome (vEDS), has mimicked the years of working through speech therapy, as my family tried to decipher the tongue-tied soliloquy I called talking. A million details scrambled together, just enough to make it virtually impossible for others to understand without the dedication of an expert translator.

Little did I know my speech delays were just the tip of the iceberg of symptoms for me, and not the only ironic way my vEDS would affect my life. Living undiagnosed for 27 years meant a life filled with unexplainable infections, dozens of surgeries for ruptured tendons and ligaments, or to repair an organ whose lifespan was shorter than most of my houseplants. Dental bills that rival most rappers with platinum grills. Lax, dislocating joints that took center stage at every talent show. Migraines as sneaky and as aggressive as Joe (the stalker from ‘You’), and a host of ever-changing autoimmune flares that earned more titles than the queen herself. 

Eventually, it all led up to a case of kidney failure that caught everyone’s attention and caught me off guard. Like so many patients with a rare disorder, I had slipped through the cracks of the health care system into a place without answers and down an endless hall of doors offering nothing behind them but false hope dressed up as the newest miracle drug.

Years before my diagnosis, I began relying on my advocacy skills after realizing they were now my only lifeline in my health journey. I began asking questions and speaking up more, absorbing as much information on my health as possible, desperately trying to connect all the pieces. As I sorted through all seeming unconnected health issues, I began to see how my case could frustrate even the best physicians. The questions are unending. Learning the skills it takes to navigate the medical system and an ever-changing medical condition and treatment regime is exhausting and defeating at times. Like with every patient with a rare disorder, that feeling of being totally lost and overwhelmed made me wonder many times if I’d even have a name to the disease that felt like it could kill me at any time. That fear also became the stimulus for my advocacy and eagerness to participate in research with organizations like The Ehlers-Danlos Society and The vEDS Collaborative.

Despite the frustrations and delays, through my advocacy, I was heard, and my number one question was answered. A diagnosis of vEDS meant physician-assisted suicide was no longer the only hope I had left to remedy my rapidly deteriorating body. It meant that despite losing my ability to bear my own children, I could still be a mother one day. It meant my family and friends would understand more. It meant a whole new world of questions were left to ask. It meant there was someone to hear them and help find the answers.

It’s been 6 years since I received my genetic confirmation, and I have more questions now than I did then, but now, I also have hope. The hope that a diagnosis brings others the friendships it brought me. The hope that sharing my story shortens the time in the unknown for others. The hope that I will set the curve and defy the odds. The hope that my history helps to change the future course in the diagnosis of vascular Ehlers-Danlos syndrome. The hope that in the future, all healthcare professionals will know all types of EDS by name and help save the lives of patients like me.

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