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

Heart complications were a puzzling part of my aHUS journey

Living with multiple rare and chronic illnesses is stressful, difficult, and complicated. I have four autoimmune disorders and one connective tissue disorder, each of which comes with its own unique set of comorbidities. But the condition that causes the most issues for me is my primary illness, atypical hemolytic…

Grief is like an ocean when buffeted by new, and limiting, symptoms

Note: This column was updated March 17, 2025, to correct that the writer takes an antibody therapy.  Grief is like an ocean. It’s cold and shocking when you first get in the water. Then the waves are constantly breaking and hitting you in the shallows, each one signifying sadness and…

With aHUS, I must pay attention to changes in weather

As the garage door opens, cold air pours in, creeping into my joints and bending my limbs. I step onto the driveway and am hit with a breeze that freezes me even more. Winter is here, and it will be like this for the next few months. I’ve always loved…

Pregnancy-triggered aHUS can be sudden and dangerous

I was exhausted but couldn’t sleep. My insides felt as if an angry lava monster had its hot hands gripping and squeezing all within my torso. I was in so much pain that I was shivering. But my nurse assured me that this reaction was probably normal, given the spinal…

Accepting support from others is one of my biggest challenges

Note: This column was updated March 17, 2025, to correct that the writing is taking an antibody therapy. It all started with me collapsing onto the hard, cool concrete outside of an emergency room (ER), as I was too weak to step up 4 inches onto the sidewalk. I know…

The many symptoms of POTS make my everyday life difficult

My eyes scanned the makeshift ramp that volunteers had made from a section of collapsed roof. I was hesitant to climb it to get into the trailer, which had a floor more than 4 feet above the ground. “At least the shingles will give my shoes a good grip,” I…

How a stroke came out of my initial aHUS hospitalization

My left eye throbbed to the beat of my heart. Each pulse seemed more intense than the last. I’d had this headache off and on for over two months, but my then-new job had me waking up at 4:30 a.m. — definitely earlier than my normal — so I chalked…