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.

Can relationships survive rare diseases and health complications?

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,…

A sleep disturbance can add to the stress of life with aHUS

Doctor appointments: They’re the bane of my existence but also a constant part of my life. Nephrologist, hematologist, primary care physician, gynecologic oncologist, pain management doctor, physical therapist, cardiologist — the list goes on. I see each of these doctors regularly. I nearly died in September 2020 and spent…

A brush with death during dialysis following my aHUS diagnosis

Dialysis, which performs the kidneys’ work by filtering blood, is hard on the human body. It’s usually given to patients whose kidneys are functioning at less then 15% because of injury, infection, disease, or other medical complications. When I was on dialysis, it caused me some atypical side…

If it wasn’t for my bad luck, I’d have no luck at all

A rare disease diagnosis can be scary, overwhelming, and life-changing, often bringing unexpected health complications and comorbidities. During my time with a rare disease, I’ve learned that I have a proclivity for medical drama. In September 2020, I nearly died when COVID-19 complications triggered atypical hemolytic…