#ThisIsIH

At #BeyondSleepy 2024 in Houston, TX, Dr. Anne Marie Morse details why #ThisIsIH is such an impactful statement and the realities of living with idiopathic hypersomnia.
Dr. Morse is a board-certified and fellowship-trained pediatric neurologist. She is the Director of Child Neurology and Pediatric Sleep Medicine at Geisinger Medical Center. She is also an associate professor at the Geisinger School of Medicine. Her clinical interests include sleep-wake disorders in neurologic disease, narcolepsy and hypersomnia disorders and neuroimmunology. Her research interests include sleep-wake disorders in neurologic disease, hypersomnia disorders and sleep-wake disorder phenotyping. Dr. Morse created the ‘Wake Up and Learn’ clinical program. It is a school based sleep education and screening program to help improve sleep culture and optimize daytime performance. This program is designed for elementary through college students. She was recently appointed to the board of directors of the Sleep Research Society Foundation.
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[@justsheley]

I don't "almost feel guilty," I feel incredibly guilty asking for help.
Sadly, I've had most of these issues since I was a child. I grew up hearing, "Eat better and exercise."
I've only ever voluntarily been awake overnight for as long as I can remember. It's just when my body would cooperate. Prednisone was the only thing that helped. Obviously, that's not a real solution.
I missed tons of school. I wouldn't take jobs that began before 10 am (in good times), and that meant sleeping the whole time I wasn't at work in the hope of waking & being on time. It rarely worked.
I can fall asleep standing up, eating, mid-conversation. The weather definitely affects me. I've slept for days with tiny periods of being awake. This is why I never had children, frankly. How would I care for them?
These days, I'm awake as little as 10 minutes or up to 9 hrs per day, generally.