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…

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…

Amid tragedy, I’m facing a mix of stress and chronic illness

My parents went missing in western North Carolina on Sept. 27, the day after Hurricane Helene made landfall, dumping months worth of rain in just a few days. The flooding and destruction were widespread and catastrophic. At my parents’ home, the water level reached about 8 feet. And on Tuesday,…

Natural disasters, including Helene, can put patients at risk

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. As I’m writing this column on Oct. 1, I’m relatively safe from the aftermath of Hurricane Helene’s battering here in Winston-Salem, North Carolina, which is in a fairly central part of the state.