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.

Featured Post

Six years into my aHUS journey, being rare is not what I thought it would be

This month marks the six-year anniversary of my life completely changing due to an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS). Six years ago, I was blissfully ignorant about just how severe chronic illness can be — the struggles, the unknowns, the inconveniences, the setbacks, and even the…

Star fruit dangers: An innocent treat is a threat to my kidneys

Star fruit: It’s sweet, crisp, bright, refreshing and, for me, potentially deadly. Starbucks’ Kiwi Starfruit Refreshers (now discontinued), star fruit margaritas, or any other star fruit treats I once enjoyed are all a “no” for me now. Sadly, the fruit, also known as carambola, is something I just can’t…

Getting diagnosed was only the beginning of my aHUS journey

Thrombocytopenia, liver failure and hematoma, hysterectomy, end-stage renal disease, hypertrophic cardiomyopathy, uncontrolled hypertension, chemotherapy-like side effects, muscle atrophy, post-traumatic stress disorder, chronic fatigue, edema, May-Thurner syndrome, nerve damage, and anemia. That’s a “quick” list of the comorbidities that accompanied my atypical hemolytic uremic syndrome (aHUS). Being diagnosed with a…

Handling the financial burdens of a chronic illness, part 2

Second in a series. Read part one. Which is more important, your cellphone or your internet? That can be a tough decision, driven by finances and circumstances. On one hand, imagine you have a chronic illness and you need a phone for emergencies. On the other, imagine your phone…

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…