Walking On Water - a Column by Shalana Jordan

Shalana “Shay” Jordan is a single mom of two boys who’s been adjusting to her “new normal” of aHUS for over two years. She also battles with Stage 4 Kidney Disease, Lupus, May-Thurner Syndrome, and severe Anemia.

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.

Amid tragedy, I’m facing a mix of stress and chronic illness

My parents went missing in western North Carolina on Sept. 27, the day after Hurricane Helene made landfall, dumping months worth of rain in just a few days. The flooding and destruction were widespread and catastrophic. At my parents’ home, the water level reached about 8 feet. And on Tuesday,…

Diseases can come in pairs or even in multiples

One disease can turn to two diseases. Two diseases can turn to three diseases, all with their own comorbidities and complications. When I was diagnosed with an ultrarare autoimmune disease that nearly killed me, I knew it’d complicate my life, especially because I was already living with another autoimmune…

How complications of aHUS resulted in a liver hematoma

I awoke to bright sunshine bathing the side of my face. For a moment, the soothing warmth felt nice, but it was soon replaced by burning, searing pain. My breath hitched, and I immediately reached to my left side. Where was I? What had happened? My head ached, my throat…

With my fiance’s health crisis, I feel a new degree of empathy

It’s the sensation you get when you’re walking up a flight of stairs and feel like you’re breathing through a straw. It’s the terrifying moment when your scope of vision begins to shrink just before you black out. It’s your legs burning and feeling like Jell-O when you’ve been standing…