Being a “cheerleader” for
your PNH loved one

My daughter was diagnosed with PNH three years ago, and since then our lives have drastically changed.

In the beginning, my role was primarily that of a
caregiver, but now I have come to think of myself
more like her biggest cheerleader.

I try to bring positivity and light whenever she needs it — even if she doesn’t always want it.

This year, my daughter’s health improved, and she regained her energy. She graduated from college and got a job that allows her to travel. Since being diagnosed with PNH, she never would have thought this life possible because of her lack of energy and frequent hospital trips. Although she is incredibly grateful about how much better she feels, she still worries that her fatigue might return at any minute and put a halt to her new success.

This is where I go from “mom” to “cheerleader.” We have long talks where I remind her of her strength and resiliency.

I also remind her to live in the moment…
“If you feel good now, do what you want!”

My favorite thing to say is, “Look back at where you started and where you are now…you are doing what you’ve always dreamed of doing!” Sometimes she asks a lot of “what if” questions. “What if I feel sick and can’t work or get on a plane by myself?” I remind her that she has dealt with these things before, and that she is strong and can deal with whatever life throws at her.

She is proof that PNH does not have to define who you are or what you achieve in life. My daughter’s graduation announcement summed up her thoughts and empowered approach to her PNH journey perfectly — “Through the good, the bad, and the unexpected, I made it!”

She continues to persevere and not a day goes by that someone doesn’t remind her of how she inspires them. In my opinion, the best thing we can do as caregivers is to be the givers of positivity and encouragement.

Our loved ones with PNH are the strong ones —
they just need to be reminded of how amazing they
are and what an inspiration they are to all of us!


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.

8/22 US-PNH-2200094 v1.0
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