She wants to take part in helping fellow rare disease patients adjust to and prepare for the new life that’s unfolding for them. Because life does end at diagnosis.
Shay also enjoys women’s health education, fiction writing, patient advocacy, photography, cruises, and international travel. She lives in South Carolina with her two boys.
Being sick with a rare and complicated disease is terrifying, but dealing with medical issues during a pandemic is even worse. I went through the hardest time of my life during the worst of COVID-19, as I spent it mostly alone. In September 2020, I spent nearly two…
To say my life completely changed when I became a mother is an understatement. Suddenly, this small, fragile being was my world and greatest responsibility. I had a second child just one year later, and now two little humans were my focus. Little did I know, a life-shattering chronic illness…
A medical emergency can be a terrifying experience for anyone. If it’s followed with a complicated and rare medical diagnosis, it just intensifies the situation. A few years ago, that’s what happened to me. Little did I know that it was the beginning of a long road. I’m terrified…
Before my medical journey began, I had heard the term survivor’s guilt before, in reference to mass shootings, natural disasters, or other tragic events. Living through something traumatic changes your outlook on life. But I never anticipated that major medical events could come with guilt as well. Three years…
Healthcare in the United States is always a hot-button topic. The U.S. healthcare system has long been criticized as being inadequate, expensive, not inclusive, restrictive, and so many other things. I received a crash course on the subject when I almost died three years ago. Surprisingly, though, once I qualified…
Plasmapheresis is a word I’d never heard before October 2020. I’d heard of people donating plasma; in fact, I had a cousin who did it for money when I was growing up. But I had no idea what plasma was used for. Little did I know it’d play a…
Note: This column describes the author’s own experiences with some alternative treatments. Not everyone will have the same response to them. Consult your doctor before starting or stopping a therapy. I’ve always found alternative medicine intriguing. It’s wild how some of these treatments that aren’t regulated or “medically proven” can…
This year, I finally did something huge on my bucket list: I went to Greece. Santorini, to be specific. The white volcanic rock, the sea cliffs overlooking the caldera, the beautiful, iconic blue steeples, and even the flying dress photo shoots — I wanted to see it all. But when…
My heart began to race. My breathing became shallow. I felt a bead of sweat form and run down my brow. My stomach churned and a lump formed in my throat. Was I having a panic attack? Who knew that merely seeing a certain building could cause such a physical…
Relationships are hard. Couples may face many challenges, such as family drama, scheduling and time management issues, the blending of two families, and disagreements. But what happens when a rare disease, medical complications, and comorbidities enter the picture? In September 2020, I almost died from multiorgan failure caused by…
Get regular updates to your inbox.