Explore these everyday stories from people living with PNH
I don’t know about everyone else, but the day I was diagnosed with PNH was a doozie. I remember the day like it was yesterday. It was a cool day in October 2014. My symptoms ranged from blood in my urine to extreme fatigue and shortness of breath. When I got the diagnosis, I had a million questions, and my mind went crazy playing out my worst fears.
I had no idea how I was going to wrap my
mind around this type of diagnosis.
After watching every video imaginable and completing a hundred internet searches about PNH, I quickly became aware how serious this disease is. I knew then I had a very different way of life ahead of me. I also knew I couldn’t dwell on it, so I decided I needed to celebrate my diagnosis day. Instead of a day that was loathed, I would recognize everything I had overcome. I could choose to hate PNH, or I could choose to positively acknowledge it. This is now a part of who I am. I began calling this day my di-aversary, “diagnosis anniversary.”
My di-aversary became a day of celebration. Sometimes it is acknowledged in a big way with a large dinner party surrounded with loved ones, while other times it’s a quiet day with a special gift to myself, like a much-wanted purse. But, no matter how I choose to celebrate this day, I make sure it is always positive.
Our diagnosis day should be a day where we honor
ourselves and everything we have accomplished,
both because of and in spite of PNH.
We should let our strengths shine through. We should celebrate how we continue to strive toward our goals so we can enjoy things that bring us joy or purpose, and how resilient we are for not letting PNH define us. I now look forward to my di-aversary every year and encourage you all to find your own way to celebrate, your own way to highlight how far you’ve come and how far you’ll go, and your own way to acknowledge your strength and determination to live the life you want and deserve.
The above represents a real person living with PNH, telling their story in their own words. This individual was compensated by Apellis for the time required to share their story. Every person’s experience with PNH is unique. This story does not include individual treatment or medical advice. You should speak with your doctor about questions you may have about PNH, its symptoms, and treatment.