Columns

Living through a pandemic was certainly not on my bucket list, especially given my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH). Learning immunocompromised people are at a high risk for the COVID-19 virus was extremely nerve-wracking. Even though I looked healthy, I knew I was in that category. During…

Planning a trip and traveling somewhere new can be exciting, but also overwhelming. I have to ensure I’ve packed everything, planned a fabulous wardrobe, and tied up any loose ends before my departure. My two chronic illnesses only add to the stress of travel. Being diagnosed with paroxysmal…

Shortly after being diagnosed with a rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), I began to experience attacks of stomach pain. They’d originate in my lower ribs and work their way down below my belly button. The attacks progressively got more severe and lasted longer: The first episode…

In 2019, I was diagnosed with my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH). I was in New York City to see a specialist and remember looking out the 23rd-floor window, worrying what this status would mean for my quality of life. I wondered if the little ants…

In 2016, I received the news that changed the course of my life, words I never thought I’d hear: “You’ve been diagnosed with two chronic illnesses.” Turns out I was battling both aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). My thoughts were filled with confusion and questions about…

At the beginning of my journey with paroxysmal nocturnal hemoglobinuria (PNH), finding information about my rare disease was difficult and frustrating. Most of the information I found wasn’t accurate or up to date, including topics like life expectancy and having children. So in addition to processing my diagnosis,…

In 2019, I gave a TEDx talk on relationships with chronically ill patients, titled “What your sick friends and family really need most from you.” Using the correlation of food, I provided what I hope was a thought-provoking speech on what it means to befriend a sick person. My…

Choosing a positive lifestyle after being diagnosed with my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), has not been easy. I went into shock immediately after hearing the news and couldn’t see how my life could move forward, much less in a positive light. After managing this mindset…

There was a brief period when my parents and I counted how many times I was poked with a needle and how many medications I took each day. On my way to appointments at the hospital, I’d begin looking for a vein for the phlebotomist to draw blood. As…

Note: This column describes the author’s own experiences with Soliris. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve received biweekly IV infusions of Soliris (eculizumab) to treat my disease, paroxysmal nocturnal hemoglobinuria (PNH), for over four…