Walking On Water - a Column by Shalana Jordan

Shalana “Shay” Jordan is a single mom of two boys who’s been adjusting to her “new normal” of aHUS for over two years. She also battles with Stage 4 Kidney Disease, Lupus, May-Thurner Syndrome, and severe Anemia.

She wants to take part in helping fellow rare disease patients adjust to and prepare for the new life that’s unfolding for them. Because life does end at diagnosis.

Shay also enjoys women’s health education, fiction writing, patient advocacy, photography, cruises, and international travel. She lives in South Carolina with her two boys.

New medications can be a stressful journey into the unknown

We take medication to get better after an illness or to keep us healthy when we have a problematic condition. I’ve never liked taking medicines, but with my atypical hemolytic uremic syndrome (aHUS) and several comorbidities, I have a slew of them that keep me alive. But sometimes, unfortunately,…

Children are the unsung heroes of the rare disease world

Living with a rare and chronic illness is horrible. It can hinder your quality of life, make it difficult to work, and even affect your relationships with family and friends. Medical treatments, doctor appointments, invasive testing, and medications are a lot for anyone to deal with — but especially for…

How I experience Soliris side effects after infusions

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. My nerves began to feel like they were on fire. Stinging and tingling were working their way down from…

The multiple ways I’m living with chronic pain because of aHUS

Most of us go to great lengths to lessen or get rid of pain, whether we’re using over-the-counter (OTC) or prescription medications, anesthesia, nerve blocks, acupuncture, meditation, or other methods. But what do we do when that pain becomes chronic? According to a report published in April by the U.S.