All hands in
Welcome to This is PNH, a place created for the PNH community to learn, connect and share: an opportunity to explore new information, gather ideas and support one another along the way.
All are welcome.
Welcome to This is PNH, a place created for the PNH community to learn, connect and share: an opportunity to explore new information, gather ideas and support one another along the way.
All are welcome.
Your opinion matters
Explore the science behind PNH, a rare disease in which the body attacks and destroys its own red blood cellsred blood cellsThe most common type of blood cell. Their job is to carry oxygen using an important molecule, hemoglobin, around the body., leading to fatiguefatigueExtreme tiredness or exhaustion. Fatigue is one of the most common symptoms of PNH., weakness, headaches and chest pain.
Take a closer look at daily life with PNH, including strategies to help build resilience in the face of fatigue.
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“There is support and information out there.
You are not alone.
There are people fighting with you, even when it doesn’t feel that way.”
– Sara, living with PNH
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“PNH is something that can be explained medically, but everyone is different.
Learning from others is the most beneficial way to make sense of this journey we’re on.”
– Person living with PNH
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“The basic information you can find on the internet hasn't caught up with the fact that many
people who are treated appropriately actually live long and decent lives.”
– Person living with PNH
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“PNH cannot take away who I really am.”
– Renee, living with PNH
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“PNH may be rare and ‘invisible,’ but it’s very real. Despite all of that,
you can live and thrive with it.”
– Kristen, living with PNH
Discover tips and tools to help you better explain PNH in a way that helps others easily understand.
Sign up to be connected to a dedicated local resource who can help support daily life with PNH, including sharing tips from the community, tools that may be helpful, and news and information.
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