Columns

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…

When you are diagnosed with a chronic illness, no one hands you a manual telling you how you’ll feel. There is no explanation about the emotional journey you will embark upon. In addition to your health challenges, an important part of the battle will be learning how to…

When I was diagnosed with a rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), in 2019, I began receiving treatment with Soliris (eculizumab) at an infusion center. I was given the option of at-home infusions but decided against it. At the time, I was battling needle phobia…

One topic that’s often discussed among new paroxysmal nocturnal hemoglobinuria (PNH) patients is whether we can work full time. Since my diagnosis in 2019, I’ve struggled with deciding what to do about my career. And I still don’t know the right answer. I put in the years and…

When I heard the words “you’ve been diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria” (PNH), my body quickly began working. My mind, however, stayed in a state of confusion. The sudden, unwanted change in my life affected my mental health. My mind couldn’t keep up with…

Throughout my past few years of living with paroxysmal nocturnal hemoglobinuria (PNH), I’ve appreciated having a solid relationship with my hematologist. I’m grateful that my appointments are open conversations rather than one-sided lectures of him explaining my disease to me. He values my input and allows me to be…