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myPNHteam Stories: Real Stories From Real Members

Written by myPNHteam
Updated on January 5, 2026

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Meet Erin

Erin is a married mother of two who lives in New York. Erin was diagnosed with PNH in 2019 and enjoys patient advocacy work and connecting with other patients.

Headaches, Fatigue, and Shortness of Breath: The Symptoms I Couldn’t Ignore
1:51 • Watch Video

Embracing the Journey: 3 Tips for Starting a New Treatment
1:44 • Watch Video

‘Please Don’t Forget I Have PNH’: What I Wish People Knew
1:34 Watch Video

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Meet Shaquilla

Shaquilla is a Florida-based analyst and mother of two teenage daughters who has been managing her PNH since her diagnosis in 2017.

Brain Fog, Fatigue, and a Missed Diagnosis: My PNH Story
2:17 • Watch Video

My Long Journey to the Right PNH Treatment
2:38 • Watch Video

PNH Symptoms and Triggers: Habits That Can Help
1:52 Watch Video

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Meet Brandi

Brandi is a blood disorder awareness activist with a passion for helping others, inspired by her 14-year battle with aplastic anemia and PNH.

4 Tips for Taking Charge of Your PNH Diagnosis
2:02 • Watch Video

How Connecting With Others Helps Me Live With PNH
1:29 Watch Video

Meet Brandi: How I Overcome Fatigue and Brain Fog With PNH
1:52 Watch Video

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Meet Maegan
Maegan is a disabled artist living with PNH. They enjoy painting, writing, and sitting with their cat, Moe, at home in St. Paul, Minnesota.

From ER Visits to Art: My Journey With PNH
2:11 • Watch Video

How Fatigue Led a Doctor To Diagnose Maegan’s PNH
2:16 Watch Video

How I Navigate a Rare Condition and Keep Dreaming Big
2:03 Watch Video

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