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

I’m learning to say, ‘There’s always tomorrow’ when I’m feeling guilty

I deal with guilt often. Guilt that I can’t work my full-time job anymore, guilt that I need rest after every activity, guilt that I can no longer be the cool mom who’s up for anything. My life completely changed in September 2020 when I became gravely ill. I…

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.

Diseases can come in pairs or even in multiples

One disease can turn to two diseases. Two diseases can turn to three diseases, all with their own comorbidities and complications. When I was diagnosed with an ultrarare autoimmune disease that nearly killed me, I knew it’d complicate my life, especially because I was already living with another autoimmune…