Explore the experiences of friends and family members supporting someone with PNH
your loved one
Since my daughter’s PNH diagnosis a few years ago, her life has been a bit of a roller coaster. As a mom and caregiver, it’s difficult to watch my daughter struggle with the symptoms of her disease and see how much it impacts her, both physically and emotionally.
As a family, we’ve always taken a proactive, team
approach to everything, including our health.
Since my daughter’s diagnosis, my husband and I have attended doctors’ appointments and met with specialists. We’ve collaborated with our daughter to help her advocate for her needs and ensure her voice is heard. We are fortunate to have an amazing team of doctors, all of whom have helped us navigate this journey, from diagnosis through treatment.
We are so grateful for this guidance, as it put us all in a better place. The treatment plan we all agreed on is working for her. And while it took us a while to get here, what’s important is that we did, in fact, get here.
If you’re on this journey now, here are a few tips that might help:
Do not let your loved one settle for not feeling well.
Before starting her current treatment, my daughter tried other options that had her feeling a little better, but not how a thriving young 22-year-old would like to feel. Her mental health also suffered when she worried about whether this might be as good as she was ever going to feel. I encouraged her to keep looking, to talk to her doctor about additional treatment options, and to be persistent in her quest to feel better. It’s important to explore all the options until you find one that works.
Notice how they are feeling.
Be sure to check in with your loved one regularly. Encourage them to have a conversation with their doctor if they are feeling off, and to lean on the broader PNH community for additional support. My daughter always felt better when she knew someone else had experienced something that she felt.
I would advise all caregivers to do some research and become active in the PNH community. My daughter has taken a very active role, but if your loved one doesn’t feel comfortable or know where to start, do it for them. Speak to others with PNH, ask lots of questions, research treatment options, and partner with your loved one’s doctors to find the right path.
Last, but not least, frequently remind your loved one that there is always hope.
Never give up hope that they can find a way to not
let PNH hold them back from the life they want.
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.