Explore the experiences of friends and family members supporting someone with PNH
Being the captain of
a relentless pursuit
When my mom was diagnosed with PNH, she decided in that moment that she wasn’t going to let it hold her back from living her life the way she wanted. As her caregiver, I want to make sure she follows through on that! I’ve learned a few things that have helped me support my mom through the ups and downs of PNH.
Remember, it’s more than just the numbers
It can be easy to fixate on the numbers and the bloodwork after every doctor’s appointment. Because I live a few hours away, I can’t regularly go to my mom’s doctors’ appointments, but I always make a point to catch up with her after. I can always hear in her voice when she is upset with her lab results and is feeling down.
I remind my mom that it’s not all about the numbers — it’s
about how you feel. And if she feels like her symptoms are
standing in her way, she should share that with her doctor.
I also always remind her that it’s not her fault, because I think that’s important to remember.
Celebrate the “wins”
We make a big deal of the good news! When my mom’s lab numbers improve, I can tell it’s a huge boost for her confidence and puts her mind at ease. So, we celebrate — even if I can’t be there in person, we talk about her progress, share our excitement, and look ahead to all the things my mom has planned. Celebrating “wins” is so important, and I always want my mom to know that I care about the check-ups, and the rest of her PNH journey, just as much as she does.
Be a constant presence
I want my mom to know I am always here, even if I can’t be with her in person. Living my life while also being a caregiver can be demanding, but we balance out our needs.
When I can be there with my mom physically, I always make sure to make the most of our time together. During my visits, we do things that distract her from doctor appointments and PNH talk. We go to Pilates to move our bodies or plan a self-care day where we treat ourselves to smoothies, manicures, and pop into our favorite boutique for some shopping. We always do something that makes us feel good and have fun together.
If we can’t meet in person, we talk on the phone multiple times a week — sometimes for a quick catch-up, sometimes for hours! If we can’t chat because I’m at work, we text, and I set aside time to call her back later. Her calls and check-ins are important to me — not a burden — and it’s important that she know that.
I’ve also made sure my mom has a strong support system in place beyond myself, encouraging my brothers and her friends to remain in close contact. By doing this, my mom gets the support she needs, and I prevent myself from feeling like I need to do it all. No one can be everything for one person. Being a caregiver means you build a strong support system for your PNH loved one — working together as a team to help them on their journey.
There are so many little actions we take for granted every day.
What you might see as “just another phone call or visit”
might be the brightest part of your PNH person’s day.
Little signs of encouragement are important and will keep your PNH person focused on what really matters: not letting PNH hold them back and staying focused on their pursuit to live the life they want and deserve!
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.