A place to find information, support, and connection
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“Trust your body and take care of it but
reach out when something doesn't feel right.”
– Brianna, living with PNH
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“I think it's important to
focus on the things we still CAN do
instead of solely thinking about the negatives. I also think it’s important to keep as much normalcy in our lives as we can...continue to do the things we value most if possible...”
– Leslie, living with PNH
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“Symptoms ebb and flow; and
treatment does not necessarily equate to ‘feeling normal’ again.”
– Amanda, 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