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Patient Stories

“Knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case.”
“It’s challenging to describe this invisible illness and the severity of how living in chronic pain everyday can change one’s life.”
“I was aware that the recovery from this rare life changing and challenging condition was also a rollercoaster recovery.”
“Don’t be scared to take loved ones to medical appointments if needed and don’t be afraid to ask for help when you are struggling.”
“Sharing my experience with others with the same condition offers a sense of familiarity and commonality to us.”
“As I’ve started a healthier lifestyle, I don’t feel that IIH is necessarily weight related, but more so related to what we eat.”
“I can tell you it gets better! You will adjust to your new normal and you will kick this awful illness in the ass! “

You are not alone

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