Life often confronts us with challenges that remain hidden, unrecognized by others, lurking beneath the surface. For individuals like myself, these challenges take the form of invisible afflictions. My journey has been one of unwavering resilience and determination as I navigate the intricate terrain of Ehlers-Danlos Syndrome (EDS), Pectus Excavatum (P.E), and multiple cancer diagnoses. In this blog post, I will unveil my story, shedding light on these concealed battles, while passionately advocating for awareness.

A Concealed Struggle: Ehlers-Danlos Syndrome (EDS)

My journey began with an unseen adversary known as Ehlers-Danlos Syndrome. EDS is a connective tissue disorder that gives rise to a multitude of issues, ranging from hypermobility to skin sensitivities. At the age of 23, I received the diagnosis of EDS, which provided clarity about the complications I encountered during my initial major surgery—the Ravitch repair for Pectus Excavatum at UCLA at the age of 20 in 2007.

Pectus Excavatum: The Visible Outcome of EDS

My Pectus Excavatum went misdiagnosed until I was 19 years old. It was so severe that it imperiled my heart and lungs, making every breath a struggle. On the Haller index, mine was 13.9. UCLA prepared me for The Ravitch repair surgery in 2007, initially intended as a two-part procedure, evolved into a series of operations, each fraught with complications I had a huge team of doctors for each of these surgeries. The first surgery in 2007 involved breaking and wiring all my ribs, along with inserting a supporting bar for six months; this surgery took over eight hours due to how severe my P.E. was. This surgery ended up being complicated by my EDS, necessitating further interventions due to infections and allergies to medications that were given, which almost took my life.

The Second Battle: P.E Recurrence

Years later, P.E reared its head once more, casting a shadow over my heart and lungs. My EDS diagnosis complicated the already arduous task of finding a surgeon willing to operate on me. Thanks to my determined cardiologist, I received a life-saving Nuss procedure at UCLA, albeit with its own set of complications that consigned me to the ICU for weeks.

Living with a Bar in My Chest

Initially intended to remain in place for only four years, the Nuss bar was removed at the four-year mark. However, my cardiologist's concerns about the effects of EDS led him to advocate for my final P.E repair in 2018 when it became evident that my P.E had returned for a third time, more severe than ever, causing major cardiac issues. The surgery was performed by a surgeon in Las Vegas, and the Nuss bar was implanted this time for life. In 2018, I underwent my third P.E repair surgery to permanently secure the Nuss bar in place. The surgery was four hours long with a team of doctors. The procedure was marked by lung complications, keeping me in the ICU for weeks, but I am profoundly grateful for the bar that keeps me alive still to this day.

The Cancer Chronicles

My battle did not conclude with P.E and EDS. Cancer made multiple appearances in my life. In 2016, I confronted stage 1B melanoma and emerged victorious. Nevertheless, the disease resurfaced twice in 2019 stage 1A & Stage 1B, In 2022, I received a cervical cancer diagnosis, necessitating a Hysterectomy to be performed and in 2023 another Melanoma diagnosis Stage 0.

A Message of Resilience and Advocacy

My journey has been punctuated by numerous surgeries, hospital stays, and unforeseen challenges. Nonetheless, these experiences have molded me into a resilient advocate, committed to raising awareness about EDS, P.E, and cancer. These are conditions that often slip beneath the radar, impacting more lives than we can fathom.

I want to leave you with this message: regardless of the challenges you confront, whether they are apparent or concealed, you possess an indomitable spirit. As I have come to realize, what doesn't break you only serves to strengthen you. It is through the grace of God that we unearth the strength to persevere. Never relinquish hope, and always remember that you are not alone in your struggles. Let us collectively shine a brighter light on these frequently overlooked conditions and provide support to one another on our journeys toward health and happiness.