A proud moment – publishing a chapter in narcolepsy clinical guide

By julie | March 3, 2016 |

IMG_4549A few nights ago, I returned home from work exhausted and found a mysterious heavy package on my doorstep. Inside was a brand new copy of Narcolepsy: A Clinical Guide (2nd ed.), edited by Dr. Meeta Goswami, Dr. Michael Thorpy and S.R. Pandi-Perumal.

As a patient advocate, it was a HUGE honor to contribute the chapter “Succeeding in School and in the Workplace with Narcolepsy” to this narcolepsy book for health professionals. Seeing my name listed amongst such renowned narcolepsy specialists as the author of a chapter was so cool!

Opening this book to chapter 29, I smiled. I cried. I let my fingertips glide slowly over the words, soaking up this accomplishment. I know my dad would be so proud.

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Drs. Goswami and Thorpy are renowned narcolepsy experts who I look up to so much, so I could hardly believe Dr. Thorpy’s amazing response to my chapter. He recently wrote: “I really enjoyed your chapter. I think it is one of the best assessment of school and work that I have seen. I have already quoted it in manuscripts that I have written.”

IMG_4552It was a lot of work to write this chapter as a person with narcolepsy. This style of writing doesn’t energize me. So it was a labor of love and determination to push through to the finish line. But I did it!

I hope this will help health professionals to better serve their patients with narcolepsy in pursuing school and work accommodations. Thank you for your continued support of my efforts.

Posted in Advocacy, Blog, Communicating Narcolepsy, Excessive Daytime Sleepiness, Hypnagogic Hallucinations, Living with Narcolepsy, Medication, Meditation, Memoir, Narcolepsy, Narcolepsy at Work, Narcolepsy Awareness, Narcolepsy Blog, Narcolepsy Book, Narcolepsy Diagnosis, Narcolepsy Doctors, Narcolepsy in School, Narcolepsy Medications, narcolepsy memoir, Narcolepsy Nonprofit, Narcolepsy Research, narcolepsy resources, Narcolepsy Spokesperson, Narcolepsy Symptoms, Narcolepsy Treatment, News/Media, Project Sleep, Raising Awareness, REM Runner Blog, Sleep Awareness, Sleep Blog, Sleep Disorder, Sleep nonprofit, What Is Narcolepsy?, Why Sleep Matters?, Wide Awake and Dreaming

2 Comments

  1. Heather on March 4, 2016 at 8:43 am

    Hi Julie, Will we have the opportunity to read your chapter. It could be very helpful to parents of pwn also. Or is this book for health professionals only? Well done. I can relate to your comments re this not being ‘writing for pleasure’ type thing – so extra well done! Best always, Heather

    Reply
  2. Arnold Gendelman on May 14, 2016 at 11:46 am

    Julie
    Simply said.
    Without you, your commitment, your incredible spirit, and fight for a better and more beautiful life…we….all of us, would be alone.
    I noticed that Huffington wrote and published a book about the importance of sleep.
    How did she, all of a sudden, become the expert? How much of what she has in it came from your work. I have not read it yet, only sharing my sense of it with you, it needs to be checked.
    Warm regards always and everywhere,
    Arnold

    Reply

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