Explore these everyday stories from people living with PNH
Taking back control to be present for my kids
Time is not something we can purchase or get back. I was diagnosed with PNH 7 years ago. In some ways, it feels like yesterday, and sometimes it feels like I’ve been on this journey for a very long time. I’ve learned so much about myself over the years that I feel like I’m a “new” Brenda. But it wasn’t easy getting to this point.
When I was diagnosed, I knew things would be different. I wanted to be there, to be present, for my 2 kids. I told myself I was going to focus on the positive in life and that I would never settle for an “it is what it is” kind of life. I wanted to do everyday things with my family.
But then I found myself lying in bed crying because I wanted to be in the backyard playing tag with my kids, but I couldn’t because I was too fatigued. I would have trouble focusing on what my kids were saying or would lose my place in a bedtime story because of brain fog.
My PNH was changing who I was as a mother, and that was completely unacceptable.
I knew I needed to talk to my doctor and make a change. As I sat with my doctor with tears in my eyes, I said, “I’m glad you get to go home and play with your children. I want to be able to do that with mine, but I can’t. This fatigue and brain fog won’t let me.” I felt like PNH was dictating my life, and I wanted to take back control.
I wanted to see a PNH specialist and explore other treatment options that might work better for me. I mean, I have to live with PNH for the rest of my life, but shouldn’t that life be filled with things I want, like spending quality time with my children? I knew that exploring these different treatment options meant I would have to get out of my comfort zone, but I figured I’d rather be uncomfortable for a little while than for the rest of my life. If I wanted change, I had to work to try to make that change happen.
And guess what? I found something that worked for me!
Everyone is different, and I still have both good and bad days, but the bad days are far fewer than before.
I’m so grateful for that. And I’m grateful for being able to actively participate in my children’s lives – missing fewer of their school activities and reading more books to them. My kids have noticed the change, too. They even wrote essays about how strong I am and how I’m always present and cheering them on. This fills my heart with joy.
Thinking back to that conversation with my doctor puts a smile on my face. I’m so proud of myself for recognizing that I wanted more and voicing my needs. Getting here wasn’t easy, but I see how much my life has changed for the better and the impact I’ve had on my children, and it was all worth it. I hope this inspires you to push for what you want in life – you never know what’s possible until you try!
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.