Hello from SLEEP 2013!

by julie on June 8, 2013

This week, I attended and spoke at the APSS SLEEP Meeting, a.k.a. “the Superbowl of Sleep.” Thousands of sleep researchers and clinicians from all over the world attended this meeting on June 1-5 in Baltimore, MD.

On Wednesday, I participated on a pediatric narcolepsy panel hosted by Dr. Judith Owens with pediatric specialists, other patients and advocates.  I shared my patient journey and narcolepsy advocacy initiatives. Two major areas of concern surfaced in the discussion:

1. The psychological toll on young adults diagnosed with narcolepsy. One clinician described that he sees a lot of depression in young men and anxiety in young women. Doctors hoped to connect patients to support services.

2. Difficulties gaining support and accommodations from school systems. Many school administrators and teachers are not educated on narcolepsy. Doctors, advocates and students fight uphill battles to gain accommodations. General population awareness campaigns may increase awareness and understanding of the serious nature of narcolepsy.

At SLEEP 2013, I learned a lot (research updates here), visited with old friends and met amazing new friends. It was a joy and honor to be included in this meeting. Here are some photo highlights.

Also: Check out my Research Updates from SLEEP 2013.

{ 6 comments… read them below or add one }

Darcie June 9, 2013 at 4:28 pm

My 15yr daughter has narcolepsy and is at the end of her freshman year. We struggle to have her 504 written in a way that properly covers all her needs and helps the teachers be properly educated on her condition. Even though we have given printouts and had lengthy talks with her teachers and school councilor, they refuse to accommodate to the most simple requests of her 504. Thank you for the continued work for teens with narcolepsy it’s still such an uphill battle.

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julie June 9, 2013 at 4:44 pm

Hi Darcie,
I’m so sorry to hear that your daughter’s school has not been accommodating. This is very unfortunate and unfair. Thank you for supporting your daughter’s experience. I hope things improve.

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Nancy Waldman June 11, 2013 at 5:00 am

HI Julie,
I have a 12 year old daughter with narcolepsy. She loves to write and would like to share her experiences with other young people dealing with narcolepsy. Is there somewhere that you would recommend that she could share her writings?

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Jessica June 17, 2013 at 11:37 am

There are a number of places she can go to connect with other people with N – one is the NN forum at the narcolepsynetwork.com and then there are a number of Facebook groups – a good one might be narcolepsy pen pals. There are a few teens I know of as well as parents who are moderating for their child with n.

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chrys July 8, 2013 at 5:07 pm

Hi Julie,
I have not had any issues with my 9 year old regarding school. Part of that may be due to the first day of kindergarten I had made the teacher aware something was wrong and to please bear with us while we worked to see what was going on. It also helped that this is a small school. Once he was diagnosed by that time he was in second grade we all let out a collecective sigh. My concern is the medical community. We have a childrens hospital however the only specialist in sleep disorders is gone, the sleep disorder clinic and neurology can still handle the medications however I am at a loss as to what to do when we need additional info. Currently we are in Delaware. Thank you in advance.

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julie July 11, 2013 at 4:43 pm

Hi Chrys, I’m very sorry to hear about this current trouble with the medical community in your area. I am not a medical expert, just another patient, but I would recommend possibly considering seeing Dr. Judith Owens at Children’s National Medical Center in Washington, DC. She’s an amazing narcolepsy pediatric specialist. Hope that helps! Thanks for supporting your son’s experience. Sincerely, Julie

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