Advocating with honesty and vulnerability

Life with PNH can be challenging, and there are times when living with PNH can feel lonely. What I’ve found is that most of the time, it feels lonely because you’re not sharing your journey with others in an open and honest way. People who don’t have PNH don’t know what it’s like to live with it. I’ve learned that being vulnerable enough to open up and advocate for yourself with those close to you can be helpful in explaining your journey with PNH.

Don’t shy away from being vulnerable.

It’s okay to share with family and friends when PNH is holding you back. It helps them better understand what’s happening inside your body, and what you have to deal with every day. Communicating how I feel to my support group has helped improve my PNH journey; it’s made me feel less isolated, less alone, and like I have the support I need to manage it. I have certainly struggled with feeling guilty when doing this, mainly because I don’t want to be a burden. But what I learned is that it’s okay to lean on your support group – friends, family, partners, coworkers – when it’s needed.

Find your voice and use it.

Be proactive when it comes to life with PNH. It’s okay to let others know that you are living with PNH, and what that life is like day by day. By being open about it, I was able to create a supportive atmosphere both at work and at home.


The above represents a real person 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.

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