Walking On Water — Shalana Jordan

Walking on Water BANNER

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.

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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…

Handling the financial burdens of a chronic illness, part 1

This column is the first in a three-part series about the financial burdens of rare diseases and chronic illnesses. $1.3 million. $1,500. $84,000. Those are some of the costs I was left with when I nearly died of atypical hemolytic uremic syndrome (aHUS) in 2020. My hospital bill for…

Losing your career and income can mean losing your identity

In American society, work life is a huge part of our culture. Many of us are pushed to complete primary school, attend higher education, and start a career, in which we’re expected to work until full retirement age. According to the Social Security Administration, that should be age 67…

When insurance guidelines hold more sway than they should

Warm tears welled up in my eyes, and I could feel my neck and face turning red. Something I’d long hoped for was slipping out of my hands. So I asked the question I was burning to ask: “I have dual enrollment. If Medicare won’t cover tirzepatide [often known by…

The edema caused by my kidney disease is with me everywhere I go

I winced as I stepped down onto a stair with my left foot. A swirl of dull, aching pain was joined by the feeling of skin tearing and puffiness. It felt like my ankle had an inflated life preserver wrapped tightly around it, cutting off more of my circulation with…

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…

A new doctor brings something that’d been in short supply: Hope

I nervously tapped my foot while waiting in the examination room to meet my new nephrologist. I could hear him talking in the next room, so I knew he was finishing up there. When he walked in, he extended his hand and introduced himself. But he stumbled on his words…