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.

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No answers about what’s causing severe inflammation and swelling

Swelling, swelling everywhere. I can’t find a reason for it, but it’s resulting in multiple issues for me. In the fall of 2020, I nearly died from an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS), an autoimmune disease in which my immune system attacks and destroys my red…

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…

What does it mean to be brave?

“You’re so brave.” I’ve been told this numerous times. I have a good friend who says it to me often. But how does one define bravery? When I think of bravery I think of someone fighting to right an injustice. Fighting for someone who can’t defend themselves. Or standing up…

As rare disease statistics go, my case of aHUS is unusually rare

Rare diseases are, by definition, uncommon, but I’ve been surprised by how many people are affected by them. About 1 in 10 people in the United States has a rare disease, or around 30 million people. So it’s likely you know someone who does. But as Rare Disease…

My time on dialysis was the darkest part of my aHUS journey

Facebook Memories is one of my favorite features on that social media platform. It reminds users of what they posted that day in years past. This week, I came across a Facebook Memory from two years ago that stirred up a lot of emotions. On Feb. 5, 2021, I was…