Paula Gonzalez
Paula Gonzalez
As a child, my days were painted with a palette of discomfort. The burning, tingling sensations that gripped my hands and feet seemed to cast a shadow over my every move. Panic and anxiety became my constant companions as I grappled with the mystery of my affliction, yet doctors' reassurances of mere "growing pains" only fueled my frustration, especially when it came to playing sports which felt almost as if I was being engulfed in flames.
It was during an ordinary visit to my optometrist that a flicker of hope ignited within me. Amidst the gentle swirls of my cornea, he spotted something out of place and whispered the name of a rare condition – Fabry’s disease. However, despite his subtle suggestion, it would take two long years and a referral to an ophthalmologist before I found myself standing on the threshold of a diagnosis.
The catalyst for my revelation came from my uncle, a nephrologist, who stumbled upon a conference led by Dr. Anjay Rastogi which focused on Fabry patients. The pieces of my puzzle suddenly fell into place as he recognized the familiar symptoms mirrored in the stories of others. At the age of 23, I became the first in my family to bear the weight of Fabry's disease, a revelation that left me grappling with a tumult of emotions. Relief mingled with trepidation as I faced the arduous road ahead, paved with infusions, exams, and medications. With my diagnosis came a newfound determination to carve a path of support for others navigating the same journey. I yearned to spare them the years of uncertainty and dismissal I endured, hence my resolve to establish a Fabry’s support group through CORE Kidney and Dr. Rastogi.
As the years unfolded, my battle with Fabry's disease continued, punctuated by moments of triumph and setback. I stood by my commitment to raise awareness and advocate for those affected by this rare condition through the CORE Kidney Program.
Today, as I stand on the precipice of a new chapter, I find myself grappling with the complexities of grief and rediscovery thanks to support from the CORE Kidney Program. While Fabry's disease has undoubtedly left its mark on my life, I refuse to let it define me entirely. For in the end, I am not merely a victim of Fabry's disease, but a survivor, a warrior who refuses to be subdued by the shadows that once threatened to consume me. And as I navigate the winding road ahead, I do so with the knowledge that I am not alone, but with the support of family, the CORE Kidney Program, and Dr. Rastogi. My story is but one thread in the rich tapestry of human resilience and triumph.
Written by Simran Ovalekar