Explore the experiences of friends and family members supporting someone with PNH
As a child, you think your parents have it all figured out. You think that they are fine, and that they don’t need you to support them emotionally. Then, something comes along that changes their life and rocks their world, and you learn that your parents are human, just like you. They have their successes and failures, just like everyone. In these moments, you also learn a lot about yourself, which I want to share in case it helps others better support those they know with PNH.
Since my mom’s PNH diagnosis a year ago, I’ve
learned I am capable of being a rock for my mom,
just like she’s been for me my entire life.
The funny thing is that it came naturally. One day, everything was fine, normal, as it’s always been. Then everything changed. Following her diagnosis, I immediately went into protection mode — it was instinctual and a strength I didn’t even know I had in me. I found I had an inner strength that helped me adapt to being a caregiver, and to being an ongoing source of strength and support for my mom.
I learned to listen — and I mean really listen. I don’t always understand the medical terminology, but that’s okay, because I’m always listening and learning. Sometimes, all my mom needs is someone to listen to her concerns. You don’t always have to think of the right thing to say — sometimes there isn’t a “right” thing to say, and your silent support is more than enough. I t’s so easy to want to fix things for someone you care about. However, I’ve realized I will never have all the answers to my mom’s worries, and what I can really offer her is an ear to listen and a shoulder to lean on … and to remind her that I love her and that she is not on this journey alone.
Putting faith in other people is also something that I’ve learned to do. I can’t control my mom’s
treatment plan or outcomes — I must leave that to the professionals. The only thing I can control is
how I support her through the good times and the bad. I’m al ways looking for cues and ways to be
there for my mom.
PNH came into our lives quickly and unexpectedly and we weren’t sure what was going to happen.
My mom doesn’t let PNH define her or our family. True, it’s a part of our lives now, but it’s just that: a part of our lives. We won’t allow it to take over every thought or every conversation. We still enjoy many of the same things we did before — and spending quality time together has brought our little family closer.
I never thought I would be in the role of caregiver for one of my parents, but I am honored to do it.
My mom is the most important person in my life, and I am here with unconditional support for her.
While I would certainly prefer my mom not
have PNH, this journey with her has helped me
grow as a person and a daughter.
I also forever feel connected to my mom in a way that may not have happened otherwise. I’m grateful for the special bond that we share and how we help each other navigate through the journey of PNH.
The above represents a real person caring for someone 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.