Columns

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…

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…

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. “OK, guys, I told you Mom is cool. Your mama just got a face tat!” My youngest child furrowed his eyebrows…

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. A sharp twitch jolted my right eye, like lightning striking. I closed my eyes, pressing my hand over the aching spot.

My mouth practically watered at the sight of the cool, crisp, and bubbly fountain drink filling the cup. The cashier handed me my receipt and passed me the drink — my favorite part of eating out. I eagerly tore into the straw wrapper before I even sat down, craving that…

The first few years after I became chronically ill from a handful of rare diseases were rough — medically, emotionally, physically, and financially. There were many times I had to get creative just to make ends meet. But one lucrative money-making endeavor I used to do often is no longer…

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. The wind blew through the brown, loose curls that framed my face. As the gusts picked up, my hair blew…

Unbeknownst to me, when I walked into the emergency room on Sept. 16, 2020, my life was about to completely change forever. I assumed I had an infection or COVID-19 and would be given medicine and a doctor’s note to stay home and rest. But that wasn’t the case. Instead,…