sleep blog

At age five, Makenna was a healthy bright child in Kindergarten, with a great sense of humor and a charming magnetic personality. Under the Weather:In February 2011, Makenna came down with pneumonia. She was very sick and admitted to the Children’s Hospital for IV Antibiotics. She recovered from the infection, but never got her strength […]

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I LIE A LOT in my memoir. Oh, not lying like fibbing. (Well, you can judge that later.) I mean, lying as in reclining. It’s a memoir of narcolepsy after all!  I lie down and around so much in my narcolepsy memoir that I’ve called in grammar gurus to make sure I’m using the correct form […]

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Island Practice is the mesmerizing story of Dr. Tim Lepore, the only surgeon on Nantucket Island. Thirty miles off the coast of Massachusetts, Nantucket is known for its beaches, red pants, and sky-high real-estate prices. Author Pam Belluck reveals a different side of the island, a diverse year-round population with quirky medical problems and a doctor […]

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“Do I forgive myself for having narcolepsy?” I wondered recently. What a terrible question to ask myself. I didn’t cause my narcolepsy… so why would I need to forgive myself?  I aim to inspire others, yet I’m still battling my own demons. Am I a phony? Five years ago, I found the words narcolepsy and cataplexy, a […]

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I’m thrilled to share my guest blog post, “Notes on Narcolepsy: Part 3 – From the Patient’s Perspective,” on Psychology Today’s “The Land of Nod” Blog by Dr. Shelby Harris. Dr. Harris is a friend, a clinical psychologist and the Director of the Behavioral Sleep Medicine Program at Montefiore Medical Center. For this post, she asked me to […]

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[Photo: Julie with Dominique Friend, Sickle Cell Disease Advocate] This Wednesday, I had the honor of speaking on the Patient Advocate Panel at the “InnovationPharm Event” hosted by Siren Interactive, in conjunction with the 7th Annual Rare Disease and Orphan Drug Leadership Congress in Philadelphia, PA. The round-table discussion over dinner focused on how pharmaceutical companies can […]

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Heartbeats: Finding Mine Again

by julie on July 17, 2012

“Where there are no words… know the silences are carrying the thoughts and prayers of all who love you.” -Dawn Dais  “What is this?” I wondered, placing my hands on my collar bone to get as close as possible to the problem. I sat in my parked car and looked out into the rain. Six […]

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Before I Die…

by julie on July 16, 2012

“Before I die…” caught me off-guard on Saturday. I was driving down 14th street NW in DC, when I slammed on the brakes and pulled over. I didn’t know what to expect, but the beautiful messages of hope and love made my day! I took photos but  didn’t contribute to the wall. I mulled it over […]

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The Summer 2012 edition of Community Magazine is out and hotter than ever! I really enjoyed writing the cover story and working with Caring Voice Coalition’s team – they are passionate about patients! Check out my feature narcolepsy article, “In Sickness and In Health” pg. 16-19:  [issuu width=420 height=272 backgroundColor=%23222222 documentId=120627200108-e7727450584c4c56af6093c6d21d4463 name=cvc_summer2012 username=rocketpop tag=cvc unit=px v=2] […]

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“Don’t be afraid of the space between your dreams and reality. If you can dream it, you can make it so.” I dream a lot, but one dream stood out recently: I saw myself  in a handstand position – whirling my legs around like I was an acrobatic superstar. Um, yeah right. I love yoga, […]

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