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.

Masking helps hide the effects of CKD and aHUS, even from myself

Long, voluminous, deep brown wigs; charcoal eyeliner; fluffy eyelashes and lash glue; sparkly rich tones of russet and copper eyeshadow; shaped and ombre drawn eyebrows; blood red lipstick coated in shiny gloss; perfectly manicured, gold glitter acrylic overlay on my nails; and beautiful, flirty sundresses: I use them all to…

The complications when healthcare program logistics vary by state

When you have a chronic or rare illness, healthcare becomes complicated. Adequate coverage, rising costs, and navigating unclear systems can be just as stressful as suffering with an illness. I recently moved to another state, and even though I began transitioning all of my medical care weeks before my move,…

Sometimes I forget just how rare living with aHUS is

“So is this normal for you?” My hematologist crossed one arm over his chest and supported his chin with one hand as he gave me a concerned and puzzled look. My blood pressure was 175/146 mmHg, which is considered very high. I sighed. “Yes, my blood pressure has been mostly…