Walking On Water - a Column by Shalana Jordan

A perfect storm of events in September 2020 nearly led to my demise. The intensive care unit became my temporary home for almost two months as I was thrust into the world of rare disease, chronic illness, and intense medical care. Diagnosed with an ultra-rare disease called atypical hemolytic…

Here in the United States, obesity is considered a common chronic illness. The World Health Organization defines it as “abnormal or excessive fat accumulation that presents a risk to health.” While the obesity rate has been declining since peaking in 2022, 37% of American adults were still considered…

Living with multiple rare and chronic illnesses is stressful, difficult, and complicated. I have four autoimmune disorders and one connective tissue disorder, each of which comes with its own unique set of comorbidities. But the condition that causes the most issues for me is my primary illness, atypical hemolytic…

In the fall of 2020, I experienced a slew of severe symptoms that makes the head spin just thinking about it. These included a 104 F fever, chills, body aches, an upset stomach, a loss of appetite, abnormal physical weakness, deep purple bruising all over my body, an unrelenting migraine,…

My vision is a little blurry when I wake up. I rub my eyes to get them to adjust. My right eye clears with no issues, and I stretch while looking out the window. But my left eye feels off. My vision is still a little cloudy, and it feels…

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…

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…

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…

Many people may consider something rare as being unique. One of a kind. Nothing else is like it. Being rare can suggest exclusivity, or being in a class of its own. For me, rare means dealing with five different rare diseases. They are lupus, hypermobile Ehlers-Danlos syndrome (EDS),…

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…