2 Things I Wish People Knew About My PNH

Erin Fontin discusses living with PNH, emphasizing the importance of communication and understanding from others.

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Transcript

00:00:00:00 - 00:00:26:18
Erin Fontin
I typically look like a healthy person. When I meet somebody new, it’s not until I tell them I have PNH that they actually find out and know about it. I’m a people pleaser, so for me, it’s really difficult to tell someone, “Hey, I know I told you I could do this, but now I can’t.” It’s hard for them to remember. Even my husband as an example, who’s the person who’s closest to me, who has witnessed all of my PNH flare-ups,

00:00:26:20 - 00:00:47:13
Erin Fontin
sometimes I look at him and I’m like, “Do you remember that I have PNH? Because sometimes I think you forget.” And he’ll admit it. Sometimes he’ll say, “Yeah, no, I, I forgot.” It’s important for me as a patient to also understand that that’s OK that people forget you have PNH. They don’t live with it day-to-day. When you don’t see something, it’s not always in the forefront of your mind,

00:00:47:13 - 00:01:10:17
Erin Fontin
so you’re not going to always remember. So I would love to just shout from the rooftops to people who don’t have PNH: one, PNH is unpredictable, and two, I have PNH, please don’t forget that. So there’s a lot of internal struggles that I think people who don’t have PNH don’t realize is going on. And I think it’s hard for people to understand that, especially when it comes to making plans.

00:01:10:20 - 00:01:33:09
Erin Fontin
So it’s really just conversations with yourself, conversations with others as far as setting those boundaries. So PNH, you can live a relatively normal, healthy life, once you become stable, you are on a good treatment pattern, and you are in a positive state of mind. Learn more and connect at myPNHteam.com.

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Since her diagnosis with paroxysmal nocturnal hemoglobinuria (PNH) in 2019, Erin Fortin has learned to navigate the complexities of a rare and often invisible disease. While living in New York with her husband and children, Erin has embraced advocacy and community support. However, she still wishes people — including the people closest to her — better understood what it’s like to live with PNH.

“There’s a lot of internal struggles that I think people who don’t have PNH don’t realize are going on,” she said.

If she could shout two things from the rooftops, Erin said it would be these: “One, PNH is unpredictable. And two, I have PNH. Please don’t forget that.”

1. PNH Is Unpredictable

One of the hardest aspects of PNH for Erin is the way it disrupts plans — often without warning. “I’m a people pleaser,” she said. “So for me, it’s really difficult to tell someone, ‘Hey, I know I told you I could do this, but now I can’t.’” Even on days when she looks healthy, her symptoms can be simmering beneath the surface, ready to flare up without notice.

Erin said this unpredictability can be confusing to others. “I think it’s hard for people to understand that, especially when it comes to making plans,” she explained. It’s not about being unreliable — it’s about managing an illness that doesn’t always follow a schedule.

Over time, Erin has learned to be open and honest with others as well as herself. “It’s really just conversations with yourself, conversations with others, as far as setting those boundaries.”

2. PNH May Be Invisible, but It’s Always There

Because PNH doesn’t always have visible symptoms, Erin said many people — even close family and friends — forget she’s living with a chronic condition. “I look like a healthy person when I meet somebody new,” she said. “It’s not until I tell them I have PNH that they actually find out about it.”

Even her husband sometimes needs a reminder. “He’s the person closest to me, who has witnessed all of my PNH flare-ups. Sometimes I have to look at him and [ask], ‘Do you remember that I have PNH?’” she said. “‘Because sometimes I think you forget.’ And he’ll admit [that he forgot].”

Erin understands this forgetfulness isn’t malicious. “It’s important for me to also understand that it’s OK when people forget you have PNH,” she said. “They don’t live with it day to day. It’s not always in the forefront of [their] minds.”

Still, the invisibility can be isolating. Erin hopes that by speaking out, she can help others recognize that invisible illnesses are still very real — and that remembering makes a difference to the people living with them.

A Full Life With PNH

Despite the challenges, Erin wants others to know that life with PNH can still be fulfilling. “You can live a relatively normal, healthy life,” she said. “Once you become stable, and you’re on a good treatment pattern, you’re in a positive state of mind.”

Join the Conversation

On myPNHteam, people share their experiences with PNH, get advice, and find support from others who understand.

What do you wish the people in your life knew about your PNH? Share in the comments below.

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