Being open to life’s possibilities

When I was diagnosed with PNH more than a decade ago, I was hit with a wave of uncertainty. My focus narrowed to the problems in front of me. I lost sight of any long-term goals I’d had, and closed myself off to protect myself from being hurt again after everything was taken away from me so suddenly. Although this was necessary so I could focus on the immediate health issues at hand, it also led to a lack of commitment and motivation to get back some sense of normalcy that existed pre-diagnosis.

I equate it to a broken heart that needs to heal
before allowing yourself to become vulnerable
and open once again.

Opening up to life’s possibilities, regaining the desire to work toward long-term goals, and thinking positively about the future was not easy, but I found a couple ideas that helped me along the way.

Be self-aware

Don’t let PNH consume your thoughts. Yes, you must acknowledge and face the illness head on, but for me it was also important to not allow it to control my life. Over the years, I’ve tried my best to get back as much normalcy as possible, knowing that there are some things that would be different and I would have to adapt. I try not to use PNH as an excuse, but at the same time, if you find that PNH is driving a lot of your life decisions, it’s worth discussing with your doctor to find ways to help minimize PNH’s impact on your life. This is something I continue to do this day – even 11 years post-diagnosis!

Remember that you’re not alone

Leaning on those close to me has been critical throughout my journey, as it empowers me to think positively about the future and manage my PNH both physically and mentally. This never came easily for me, but as time passed, I learned that opening up to my family and doctors helped me better manage my PNH. To be honest, something I’ve learned that has had a profound effect is that often, those closest to you are more willing to help than you could ever imagine. Many times, I found they wanted to help but just didn’t know how.

It may feel that you’re fighting this battle alone,
but that couldn’t be farther from the truth.

Proactively sharing my experience and needs with those important people allowed me to create a true support system. And with their support, I worked to minimize the role PNH plays in my life, and I can now see beyond the short-term horizon. I regained the hope of a positive future that I had once lost.


Jordan

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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