Balancing the demands
of daily life

Over the years, I’ve supported my wife throughout her journey with PNH. It has been a crazy learning curve navigating both my life and role as a caregiver. However, I’ve come up with a couple of tips that have helped me balance caregiving and my own daily life, to make sure PNH doesn’t stop me or my wife from enjoying life and going after our dreams.

First, be adaptable.

This tends to be a major character trait for me already, and I’ve found that it’s helped me through a lot.

Living life with a PNH loved one means
you have to take things day by day.

For example, being a new father, I have learned to adapt to my wife’s and daughter’s needs. When my wife has a bad PNH day, I step up with the baby to allow her extra time to relax and take it easy. I race cars as a hobby, and recently I’ve cut back on my involvement with racing to help more with managing day-to-day tasks and taking care of our daughter.

Second, identify your priorities and never lose focus.

For me, this means so much! My family means the world to me, so my main focus is them and my wife’s health. We have so many goals we would like to accomplish, but sometimes that needs to be put on hold. For example, right now, she can’t work full time due to her PNH symptoms, so we remain focused on making sure she has the time she needs to rest and feel better versus pushing to save for a house. Life, in general, can be very demanding, but when you identify and then focus on your priorities, it makes navigating the inevitable challenges much easier.

Finally, create a support system to help your PNH loved one when you are physically or mentally not available to help.

Remember, we caregivers are humans too! We have a life to live as well. I am so lucky to have such an awesome group of family and friends who are willing to sacrifice time to give us a helping hand when we need it. It’s been great for both of us. Everyone needs a break – including caregivers.

It’s important to make sure you are taking care
of yourself and your own needs so you can be a
strong support system for your loved one.

I hope these tips help you balance the demands of daily life while being a caregiver for your PNH loved one. It will never be easy, but with help and support from others, we can all get through this together.


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.

10/22 US-PNH-2200135 v1.0
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