Columns

Chasing the American dream is complicated with PNH

Ever since I was little, I was programmed to believe that chasing the American dream was my main goal in life. To pursue that goal, I believed I had to do well in school, attend college, get married, land a good job, have children, and live happily ever after. This…

Reflections on strength, 5 years after my PNH diagnosis

What are your go-to phrases for encouraging someone who’s going through a tough time? Do you sympathize with their situation and say you’re sorry, even though you haven’t had a hand in what’s happening? Do you hit them with the empowering “You’ve got this!”? Or last but not least,…

Bowling helps me cope with unpredictable PNH symptoms

My husband, John, and I recently started bowling with friends, and we’ve been enjoying it. Time seems to slow down when you walk up to the lane, take a deep breath, and line yourself up with the pins. As you step forward and lower the ball in a backward motion,…

Starting Soliris infusions for the second time on my PNH journey

Note: This column describes the author’s own experiences with Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Time seemed to slow down as I entered my infusion center last week. I’ve gotten into…

The importance of paying attention to meningitis risk factors

Fear is something I surprisingly don’t experience much when it comes to living with paroxysmal nocturnal hemoglobinuria (PNH). After I’ve been through multiple battles and come out with victories on the other side, the fear of medical unknowns diminishes. Some of my battles have included a blood transfusion, a…

Reflecting on the odds of winning my very specific lottery

What do you think of when you hear the words “one in a million”? Do you think of the chances of winning the lottery and how those odds seem almost impossible, making you sigh with disappointment and think winning could never happen for you? Yet do you still buy a…