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.

I wasn’t prepared for chronic kidney disease, an aHUS comorbidity

Renal failure, liver failure, hemolytic anemia, 18 blood transfusions, plasmapheresis, dialysis, chemotherapy, post-traumatic stress disorder, heart damage, permanent uterine damage, and a mini-stroke — I never expected any of this, or to be dying at the age of 36. All of this was my introduction to a rare…

Being rare isn’t the same as being lonely

“You’re dying.” That was my introduction to atypical hemolytic uremic syndrome (aHUS), and I’d never heard of it. On that day, my whole world turned upside down. In September 2020, I was at the top of my game. As an active single mom in a new city, I’d purchased…

New medications can be a stressful journey into the unknown

We take medication to get better after an illness or to keep us healthy when we have a problematic condition. I’ve never liked taking medicines, but with my atypical hemolytic uremic syndrome (aHUS) and several comorbidities, I have a slew of them that keep me alive. But sometimes, unfortunately,…