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.

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I struggle daily with deconditioning from my multiple illnesses

My lungs are on fire. My heart is thumping so hard, I can feel my heartbeat in my ears. My breathing is heavy and labored. Pain shoots down my left leg from my sciatic nerve. I stop on the last landing to catch my breath and lean on the post…

My complicated health journey now includes post-exertional malaise

Life with chronic and rare illnesses is undeniably complex. I constantly juggle both existing and new symptoms, frequent doctor appointments, biweekly treatments, and the ongoing challenge of staying attuned to my body. Regardless of my mental resilience, my body is no longer the same, and it simply can’t live life…

Caregivers are the unsung heroes of the rare disease world

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Raising children, maintaining a household, cooking meals, grocery shopping, paying bills, working, and the daily complexities of life can strain relationships…

A ‘glow-up’ is just the boost I’ve needed in life with rare diseases

Living with several rare and chronic illnesses is one of the hardest things I’ve ever faced. I currently live with lupus, Ehlers-Danlos syndrome, immune thrombocytopenia (ITP), thrombotic thrombocytopenic purpura (TTP), and atypical hemolytic uremic syndrome (aHUS). These conditions bring a slew of lifelong comorbidities and…