Explore the experiences of friends and family members supporting someone with PNH
Being a pillar
Hi everyone! My name is John, and I am a caregiver for my wife, who has had PNH since 2019. Throughout the journey of navigating PNH with my wife, I have come up with three tips on how, even in the most challenging times, you can be strong for your PNH loved one.
My first tip is to always maintain a positive attitude.
When you are constantly positive it allows little opportunity for your PNH loved one to be negative. This is a good way to help overcome setbacks caused by PNH. I love to race cars and often travel around the country car racing. Due to my travels, I’ve had to be away from home and miss numerous events throughout the years. Before Erin’s diagnosis, she would travel with me and watch my races. But now, because of her PNH treatment schedule, she sometimes can’t come and gets upset. Even though we’re both disappointed she couldn’t be there, I’ve always looked for the positive and said there is always another time to go. Also, while I’m at the races, I’ll call her to check in and text/send her pictures, so she feels included.
My approach of staying positive leads to my second tip, which is to always look to the future!
The struggle of PNH impacting your lives, as unfortunate as it is, is part of the journey.
When my wife has a bad PNH day,
I always remind her that today may be
bad, but tomorrow is going to be great!
We both have big dreams, so I always push us towards looking into the future at what we want to accomplish and not letting PNH hold us back from our dreams. Focusing on the future helps us not dwell too much on the present.
Another tip that has really helped me is to never settle!
I’ve always been a go-getter, so I instill that into my approach as a caregiver. By not settling, you can be a stronger advocate for your PNH loved one. In our case, we want to buy a house and are working hard toward that goal. I recently started my own business, so on top of being a father to a newborn and being a caregiver, I now have added responsibilities. I’m okay with taking on these additional responsibilities because I will never settle for anything less than giving my family the best life we can possibly have. We are focused on our dreams and working to make sure PNH doesn’t stand in our way.
As I said before, the struggle is a life journey.
Be positive for your PNH loved one, always
look to the future, and don’t settle!
Hopefully, this helps inspire and strengthen you in your journey!
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.