Walking On Water — Shalana Jordan

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Shalana “Shay” Jordan of central Florida, is a photographer, writer, retired educator, and mom of two boys. She’s navigating life with her “new normal” of battling atypical hemolytic uremic syndrome (aHUS), stage 4 kidney disease, lupus, May-Thurner syndrome, immune thrombocytopenia (ITP), Thrombic thrombocytopenic purpura (TTP), and uncontrolled hypertension. She received her aHUS diagnosis in 2020 at 36 years old.

Being a part of the company that publishes this website, BioNews, means she can take part in helping fellow rare disease patients adjust to the new life that’s unfolding for them. Hearing someone else’s experience with the “unknown” is invaluable. Being rare can be very lonely, but BioNews advocates daily to help patients realize they’re not so alone after all. Because life doesn’t end at diagnosis.

Featured Post

My hysterectomy was one of the easiest parts of my medical journey

This week marks the five-year anniversary of my hysterectomy, which I unfortunately had to have at only age 37. It was a huge, life-changing decision that would affect any plans to expand my family and could be dangerous if there were complications. This happened 10 months after I nearly died…

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…

My darkest day showed me that death was nearer than I’d realized

Death is something no one wants to talk about, deal with, or experience. In September 2020, after an asymptomatic bout of COVID-19, I landed in the intensive care unit (ICU) for almost two months with multiorgan failure and hemolytic anemia caused by atypical hemolytic uremic syndrome…

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…

Slowing down and taking stock of the positive things aHUS has given me

Each week, I write this column because I love sharing my raw experiences while living with two rare diseases and various comorbidities. I usually discuss stressful issues associated with being an atypical hemolytic uremic syndrome (aHUS) patient. But today, I’m going to switch it up and talk about…

Embarrassment was an unexpected part of my aHUS journey

It’s normal to feel embarrassment, discomfort, or shame in medical situations. Being in a vulnerable state can be a humbling experience. In September 2020, I nearly died from multiorgan failure caused by atypical hemolytic uremic syndrome (aHUS). I still haven’t wrapped my head around it. I ended up…