The Early PNH Symptom I Couldn’t Ignore

Erin Fontin shares her PNH diagnosis journey, marked by yellowing skin.

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Transcript

00:00:00:00 - 00:00:32:20
Erin Fontin
When I was first diagnosed with PNH, my skin turned yellow. My eyes turned yellow. My eyelids, the eyeballs, themselves, everything turned yellow. That really led to me realizing something was wrong. I was 24 years old. I was newly engaged. So in the midst of wedding planning, I started experiencing symptoms that I just kept dismissing and ignoring. It was like frequent headaches, fatigue, shortness of breath, like things that I was able to rationalize as, “Oh, I didn't get enough sleep that night.”

00:00:32:21 - 00:00:58:11
Erin Fontin
Maybe I wasn't drinking enough water. The day that I really knew something was wrong was when I ended up getting the stomach virus. I was at the time petrified of doctors and hospitals and needles, so I just continued to ignore it, thinking I can just ride it out at home. I remember taking a shower and it hitting me really hard where I was starting to have a little trouble breathing, just letting the water hit me and being like, “I don't think I can get up right now.”

00:00:58:11 - 00:01:18:10
Erin Fontin
I don't know at what point in the day I turned yellow. I just know that when my husband got home, he noticed immediately. When I ended up getting to the hospital, a triage nurse that was taking my information, she told me to look in the mirror. I felt very similar to the Grinch when his eyeballs are just like neon yellow.

00:01:18:11 - 00:01:41:16
Erin Fontin
That's exactly how I looked. I spent about a week in the hospital. A lot of my blood levels were crashing, so they were testing me for everything under the sun. My hematologist tested me for PNH, and that's when it came back positive. I was very lucky that there was a doctor that did think of PNH. It wasn't something he normally tests for.

00:01:41:20 - 00:01:51:13
Erin Fontin
I was able to get my diagnosis so quickly, I think, because of that hospital stay. Learn more and connect at myPNHteam.com.

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When Erin Fortin began experiencing strange symptoms in her early 20s, she was too busy to slow down. A young professional, Erin was newly engaged. She was excited about wedding planning and building her life with her husband, John. But amid the joy of that season, her body was quietly sounding an alarm.

“I was 24 years old, so a young adult just entering the workforce,” Erin recalled. “I started experiencing symptoms a little bit prior to that, that I just kept dismissing and ignoring.”

Ignoring the Symptoms

In the early stages, Erin’s symptoms didn’t seem urgent. “It was frequent headaches, fatigue, shortness of breath,” she said. “Things that I was able to rationalize as, ‘Oh, I didn’t get enough sleep that night. Maybe I wasn’t drinking enough water.’”

Even when she caught what she thought was a stomach virus, Erin didn’t initially seek help. “[It didn’t] feel like a regular stomach virus, but … I just continued to ignore it, thinking I could ride it out at home.”

‘I Don’t Think I Can Get Up’

Erin’s life changed dramatically one day in 2019.

“I remember taking a shower before getting ready to go. I was starting to have a little trouble breathing,” Erin said. “I remember sitting in the shower just letting the water hit me and being like, ‘I don't think I can get up right now.’”

When Erin’s husband came home that day, he instantly knew something wasn’t right. “The second he got home, he noticed immediately,” she said. He could see her appearance had changed, but Erin still hadn’t seen it for herself.

Everything Turned Yellow

It wasn’t until Erin reached the hospital that she fully realized how serious things had become. “The triage nurse taking my information asked me, ‘Is this a normal color tone for you?’” Erin said.

At first, the question didn’t make sense. “It was the middle of winter,” Erin said. “I didn’t go tanning. I haven't been on vacation.”

Then she saw herself in the mirror. “My skin turned yellow, my eyes turned yellow, my eyelids, the eyeballs themselves, everything turned yellow,” Erin said. “I felt very similar to the movie ‘The Grinch’ when his eyeballs are just like neon yellow — that’s exactly how I looked.”

That unmistakable change in her appearance marked the moment Erin could no longer brush aside her symptoms. “I really knew something was wrong,” she said. “The symptoms I was feeling were probably things I shouldn’t be ignoring any longer.”

A Week in the Hospital and a Name for Her Symptoms

Erin spent about a week in the hospital while doctors worked to figure out what was happening.

“A lot of my blood levels were crashing, so they were testing me for everything under the sun,” she said. Eventually, a hematologist ordered the test that led to an answer. “That’s then when my hematologist tested me for PNH, and it came back positive.”

Although the journey was frightening, Erin was grateful her diagnosis came quickly. “I was able to get my diagnosis so quickly, I think, because of that hospital stay,” she said.

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