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.

With aHUS, I must pay attention to changes in weather

As the garage door opens, cold air pours in, creeping into my joints and bending my limbs. I step onto the driveway and am hit with a breeze that freezes me even more. Winter is here, and it will be like this for the next few months. I’ve always loved…

Pregnancy-triggered aHUS can be sudden and dangerous

I was exhausted but couldn’t sleep. My insides felt as if an angry lava monster had its hot hands gripping and squeezing all within my torso. I was in so much pain that I was shivering. But my nurse assured me that this reaction was probably normal, given the spinal…

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…