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…
Columns
One of my favorite hobbies is watching competitive reality television shows. “Survivor” and “The Amazing Race,” both on CBS, are two of my guilty pleasures to pass the time. I’ve been a fan of them for many years and dreamed of one day being a contestant. However, after…
Have you ever listened to a song and connected with the lyrics instantly? When you want to keep the song on repeat, or Google the words and sit staring into space while interpreting them? Listening to music has always been my favorite way to escape reality; in fact, certain songs…
Before I departed on a recent flight to New York City, I found myself watching a woman in a wheelchair as she was moved to the front of the line to board first. “Man,” I thought, “I’d love to be the first to do that and get to my seat.”…
We’re now well into the holiday season of celebrating, sharing family time, and offering gifts! As a person with paroxysmal nocturnal hemoglobinuria (PNH), I’m excited to put forth the following three items for your seasonal giving. I have two already and plan to ask for the third this year.
In the thick of my aplastic anemia and paroxysmal nocturnal hemoglobinuria, my family and I boarded a plane to take a vacation. I hadn’t been on a flight in a while, other than to see my specialist in New York. We’d planned this trip to give me some…
I recently accompanied my grandmother to one of her doctor appointments because she’d expressed feeling nervous and having boundaries when it came to her health. I asked the doctor questions, relayed his message in simpler terms to my grandma, and spoke up as her advocate. The doctor was impressed by…
Your story is your superpower! I’ve heard this statement so many times, but didn’t fully understand it until I began sharing my own story. Since 2008, I’ve battled two blood disorders: aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). In the beginning, I was focused only on my health so…
The first time I experienced vasovagal syncope, a sudden drop in blood pressure, and passed out from a blood draw was before my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH). I remember being so nervous beforehand that my heart was racing. The second the needle went through my skin,…
After I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I was told to consider a bone marrow transplant. My doctor quickly pointed out, however, that there weren’t many minority donors available. According to the National Marrow Donor Program’s Be The Match registry, you’re…
Recent Posts
- Real-world study: Ultomiris is preferred treatment option for PNH
- New questionnaire assessing fatigue ‘reliable and valid’ for adults with PNH
- Progress in research and treatments is a reason for holding on to hope
- New gene study highlights clot risk factor in people living with PNH
- Becoming a patient advocate gave me purpose in the fight against PNH