From Fear to Fighter - a Column by Brandi Lewis

Reflections on the power of hope and life with chronic illness

Merriam-Webster defines hope as the “expectation of fulfillment or success.” To me, hope is the feeling of wishing for a positive outcome. It prompts thoughts about an altered reality full of positivity and an ease of flow. This four-letter word is simple in name but powerful in the meaning…

How a dog’s love helped me battle PNH and aplastic anemia

Growing up, I’d always heard the quote, “There’s nothing like the bond between a dog and its owner.” I didn’t entirely understand this statement until the day my dad showed up with a dog in his arms while standing on the porch. The dog, Booser, was a cuddly…

Creating a nonprofit helped me find my passion and purpose

I spent countless days at the hospital after being diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), and during that time, my family and I formed a beautiful bond with my social worker. She was always so kind and passionate, and took action to help me…

Shock and gratitude over the new FDA-approved PNH treatment

December gifted the paroxysmal nocturnal hemoglobinuria (PNH) community a big win. Fabhalta (iptacopam), developed by Novartis, became the first oral therapy approved by the U.S. Food and Drug Administration (FDA) to treat PNH. The news prompted a surge of feelings in me, given my years of…

Setting New Year’s goals helps me better manage my rare disorders

The new year is upon us, which means more opportunities to accomplish bigger goals in life. Making it to another year with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) reminds me of my resilience and drive to conquer what others would deem impossible. Because you’re reading this, you’ve…

4 steps I’ve taken for getting through the holidays with PNH

The holidays are filled with joy, happiness, love, togetherness, and so many warm, fuzzy feelings. But I wasn’t feeling any of them at the beginning of my health journey and had a hard time getting into the holiday spirit. I didn’t feel happy, joyful, or full of life. Instead, I…