Walking On Water - a Column by Shalana Jordan

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…

My eyes sting and my vision is blurry. I rub my right eye and notice black and brown makeup smeared across the back of my hand. Crap. I forgot to wash off my makeup. My throat is dry and the room is dark. There’s no sunlight coming from the window. I…

A shiver went down my spine. I crossed my arms and clenched my fist to try to warm up. My teeth began chattering, and my muscles and limbs began to curl. I felt that my body was shutting down. I was freezing. My rare disease, atypical hemolytic uremic syndrome…

I never thought there would be a day when I could sit back and reflect on the things that nearly dying has given me. But after years of struggling through an illness that used to be a death sentence, I can finally say I’m living again.

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…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. I never imagined that I’d be able to say I might be taking antibody therapy the rest of my life. But I also never thought I’d be on the brink of death in an…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. 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…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. I stir from my sleep because something doesn’t feel right. I shiver as the fan’s breeze brushes over me. I’m both cool and wet. I try to lift my arm, but it barely rises…

It’s that time of the year again — and not just for approaching holidays and snowy winter weather. It’s also the season for what I hate the most: colds and the flu. As someone with an ultra rare disease that leaves me immunosuppressed, cold and flu season is the scariest…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. Patience is not my strongest trait and never has been. I’ve always been a go-getter. When I wanted something done, I knew no one was going to do it for me, so I did…