Walking On Water - a Column by Shalana Jordan

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 was updated Jan. 17, 2025, to correct that Soliris is an antibody therapy. 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…

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…

Note: This column was updated Jan. 17, 2025, to correct that Soliris is an antibody therapy. 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…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. 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,…

When I nearly died a few years ago from a rare disease I’d never heard of, I was understandably overwhelmed. And it wasn’t only because of thoughts about my own mortality, but also all of the comorbidities that came along with the disease. I hadn’t expected that I might…

Weight is a popular topic here in the U.S., and “skinny” seems to be the desired standard. Celebrities, regular working people, and even teens and children are constantly pressured to be thin. But what happens when you have a rare, chronic disease that wreaks havoc on your body? I spent…