NARCOLEPSY: NOT ALONE Gallery & Map

by julie on July 24, 2013

In July 2013, I launched the NARCOLEPSY: NOT ALONE awareness campaign – to prove that narcolepsy is EVERYWHERE and we are NOT ALONE. This stunning photo series includes photos from all 50 U.S. States and 35 countries around the world, showcasing the REAL FACES of narcolepsy, a neurological disorder affecting 200,000 Americans & 3 million people worldwide.

Meet my friends. Click images to enlarge:

Screen shot 2014-06-16 at 10.54.35 AM

Screen shot 2014-06-16 at 11.07.23 AM

Updated 6/15/14

Join us! [View DIRECTIONS & SIGN PDF]

{ 62 comments… read them below or add one }

Carrie-Ann July 25, 2013 at 2:01 pm

I think this is a great idea Julie!! Thank you so much for doing this!!

I was thinking of doing something similar to that of what they had on the “L word”, show with either a map, or something for the pen pals ect

Good job! :) i will send mine in too!

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julie July 25, 2013 at 4:57 pm

Thank you so much, Carrie-Ann! Can’t wait to see your photo and to put the Canadian flag on the map! Thanks for your support. :-)

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Denise Finfrock July 26, 2013 at 12:23 am

Cool idea. Gotta get my sign done so I can get on the map. ;)

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julie July 26, 2013 at 3:33 am

Thank you, Denise! Can’t wait to see your photo and add you to the map!

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Makky's Mom July 26, 2013 at 1:19 am

Makenna is going to send a picture too. Go Canada!

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julie July 26, 2013 at 3:32 am

Wonderful! Thank you, Makky’s Mom!

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Leslie July 26, 2013 at 8:28 pm

Just sent mine in! With the help of one of my foster kittens. :)

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julie July 26, 2013 at 9:16 pm

It’s a great photo! Can’t wait to share. Thank you, Leslie and adorable foster kitten!

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Sarah July 27, 2013 at 8:44 am

I shall be sending mine soon. Love the idea :)
I havd narcolepsy + cataplexy since i was 11 and im 23 now n only just started understanding it fully :) xx

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julie July 28, 2013 at 11:11 am

Hi Sarah, Thank you so much for your comment. I’m so sorry to hear you’ve had narcolepsy for so long, but I’m glad to hear you are understanding it better now. Look forward to seeing your photo for the awareness campaign! :-)

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Tania July 27, 2013 at 11:03 am

THIS is an AWESOME idea. I will have to put my pic up (Narcolepsy not alone) . How exciting . Narcolepsy around the world – Dont forget to put NEWZEALAND on the map LOL

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julie July 28, 2013 at 11:07 am

Thank you, Tanya. Look forward to seeing your photo and putting New Zealand’s flag on the map!

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Irene July 28, 2013 at 3:18 pm

Oh cool! I’m working on mine right now! And I’m talking one with my puppy/service dog to-be <3

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julie July 28, 2013 at 4:49 pm

Yay for cute puppies/service dogs! :-)

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Gina Weeks August 15, 2013 at 8:08 pm

It blesses me to NO end to be a part of such a supportive world-wide community, with you at the helm, Julie!

I had been meaning to ask this for a while – do they have service dogs for people with narcolepsy/cataplexy? I happened to see Irene’s message above and it reminded me of possibly seeing about getting a canine helper/companion for myself.

Blessings! Gina >

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julie August 15, 2013 at 8:11 pm

Hi Gina,
Thank YOU for participating in the campaign! :-)

Yes, there are service dogs for narcolepsy/cataplexy. I’ve been hoping to get someone to write a guest post about this for my blog. It’s such amazing support!

Thanks again,
Julie

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Gina Weeks August 15, 2013 at 8:22 pm

I will keep my eye out for that – I sure hope it’s soon! I have lost a lot of confidence since the dx – having a companion will help me regain some of my social life again and get me out of the house more, I hope.

If anyone knows of any resources or websites, I’d love to start spreading the word (and maybe even write a blog post about it!). :-)

Thanks, Julie!

—Gina <3

Mary-Charles February 18, 2014 at 7:17 am
Brandy Martin July 29, 2013 at 1:34 am

My daughter and I both have it. I just happened to find your book when I first found out. I wasn’t even looking for anything Narcolepsy related. You have made a big difference in my life.

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julie July 30, 2013 at 1:25 pm

Hi Brandy,
I’m so sorry to hear that both you and your daughter have narcolepsy. I’m glad you found my book and website. Thank you for your kind words.

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Lori July 29, 2013 at 9:21 pm

Making my sign & anxious to put Arkansas on the map!

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julie July 30, 2013 at 1:26 pm

Hi Lori!
Looking forward to seeing your sign and putting Arkansas on the map!

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BARBARA HOPKINS July 30, 2013 at 4:54 pm

JULIE,

BEING DIAGNOSED AT 36,WAS VERY HARD FOR ME,AND MY 3 KIDS. IN THE END,I FOUGHT HARD BUT DID LOSE THE BATTLE. AS WE ALL, KNOW IT DOES END UP IN CONTROL. I HAD NARCOLEPSY FOR OVER 11YRS.,BEFORE EVER MEETING ANOTHER PERSON LIKE ME. I GOT TO GO TO MY ONLY CONFERENCE IN FLORIDA. I HAD FELT SO ALONE FOR SO LONG,BUT BEING AT THAT CONFERENCE,LITERALLY CHANGED MY LIFE,CHANGED MY HEART,MY OUT LOOK,MY ATTITUDE,MY WORLD AS IT NOW EXISTS. YES,I FEEL ALONE AT TIMES,LIVING IN A SMALL[ONE HORSE] TOWN],WHERE PEOPLE MAKE ME FEEL LIKE A LEPAR,BUT WHEN THAT HAPPENS I JUST GET ON MY COMPUTER AND FIND ONE OF MY FAVORITE NARCOLEPSY WEBSITES,AND I REMEMBER I AM NOT ALONE! NONE OF US ARE ALONE! WHAT YOU HAVE DONE IS A FANTASTIC THING FOR ALL OF US. AND,I WOULD LIKE TO THANK YOU FOR COMING UP WITH THIS IDEA,IT HAS BEEN A REAL COMFORT TO ME ON SOME PRETTY BAD DAYS. THANK YOU FROM THE BOTTOM OF MY HEART…..YOU HAVE HELPED SO MANY,IN WAYS YOU JUST WOULD NOT BELIEVE.INCLUDING MYSELF.SO, AGAIN I SAY THANK YOU….. SINCERELY,BARBARA HOPKINS

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julie July 31, 2013 at 7:26 pm

Thank you for your kind comment, Barbara. I’m so sorry to hear you have been living with narcolepsy too. I’m so glad you know you are not alone. Thank you for supporting the campaign. It brings so much joy to my heart. Many thanks, Julie

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Nancy August 5, 2013 at 10:35 pm

Hi! It’s going great! I have a question though. The other day I was looking at the pictures and I was able to “like” them and comment on them. Which means it must have been through FB but now I can’t figure out how to see the gallery through FB…..can you tell me how?

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julie August 5, 2013 at 10:56 pm

Hi Nancy, I have been adding the photos on Facebook here: https://www.facebook.com/media/set/?set=a.414431832007422.1073741830.201687293281878&type=1&l=9c973d2dce
Thank you!
Julie :-)

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Nancy August 7, 2013 at 1:14 am

Thank YOU!

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Angela August 6, 2013 at 10:31 pm

I haven’t decided about sending a picture BUT I do love what you are doing. It’s awesome!!! I am 35 now, was finally diagnosed when I was 32, but I have had the symptons as far back as I can remember, even before Kindergarten. No one ever believed me. No one ever listened. Everyone always downed me and now that I have a diagnosis people still don’t believe me because they now say that if I was as bad as I say and the doctors say then there is no way I could have accomplished all that I have in life. So I am not believeable when I don’t do enough and now the same that wasn’t enough is too much for me to be believeable. I can’t win for losing.

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julie August 15, 2013 at 8:16 pm

Hi Angela,
Thank you for your comment. I’m so sorry to hear that you’ve had narcolepsy as long as you can remember and that you were finally diagnosed at age 32. It breaks my heart to hear this. I’ve dedicated my life to raising awareness about narcolepsy so that children in the future do not go undiagnosed for so long. I know what it takes to overcome the invisible adversity of narcolepsy each day and am so proud of you for accomplishing so much in life. You are a role model to others. Hang in there!
All my very best,
Julie

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A.Marks August 7, 2013 at 6:59 pm

Thank you for making this happen. I look at this a few times a day because it makes me feel so much better!!!!

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julie August 8, 2013 at 5:22 pm

You’re so welcome! I look through the photos often too. Makes my day! :-)

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julie August 15, 2013 at 8:14 pm

I’m so glad! Thank you, A.Marks!

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Carrie-Ann Burns August 8, 2013 at 5:03 pm

I think it would definitely be amazing if you could count how many submissions you got on each flag (if at all possible) too, so others know that they are not the only one from their country if they have submitted! I would love to know how many Canadians submit to you also!

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julie August 8, 2013 at 5:23 pm

Definitely! Great suggestion, I will add the count next update. :-) Thanks again, Carrie-Ann!!

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Gina August 10, 2013 at 7:49 pm

This is such a great idea! Thank you.
Its become a big narcoleptic family tree. <3
Thank you!

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julie August 10, 2013 at 7:51 pm

Thank you, Gina! I love your description – our “big narcoleptic family tree!” :-)

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Melissa Calleeuw August 12, 2013 at 7:26 pm

Hi Julie,
In my country Belgium, Europe, it’s very rare to have narcolepsy and mostly we stand alone. Even my doc neurology didn’t knew what I had.
I think it’s really admirable that you stand up for the big family of narcolepsy patients.
I have a large amount of meds to cope and even then … I can’t go out to work, can’t drive my car anymore, taking care of my 2 boys is a living hell … I got overweight because off the meds for cataplexy and that’s why we had to decide to reduce and even stop the meds. Unfortunately the cataplexy is worse then ever …

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julie August 15, 2013 at 8:13 pm

Hi Melissa,
Thank you for your kind comment regarding the Narcolepsy: Not Alone campaign! Please consider joining us with a photo to put Belgium on the map. We want to prove that narcolepsy is international.

I’m so sorry to hear that your symptoms of narcolepsy have been so challenging. I completely understand. You are inspiring for being a mother, I truly can’t imagine the amount of adversity you overcome daily. I’m cheering for you!
Sending wakefulness and smiles your way,
Julie

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Mike Glen August 19, 2013 at 5:58 am

Hi Julie,
About 3 weeks ago I sent in my photo but have not seen it posted. Why not? Looking forward to hearing back from you.

Mike

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julie August 20, 2013 at 6:16 pm

Hi Mike, thank you for checking in about this. I’m glad we could resolve the issue and get your AMAZING photo into the gallery ASAP!

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tam kozman August 20, 2013 at 5:53 pm

Hi, Julie (Howdy, neighbor)! The Narcolepsy Network Support Group of San Diego County is planning to do a group shot on August 24th. It may be a very small group, but you’ll have it by the end of the month. THANK YOU for this awesome campaign! <3 Tam

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julie August 20, 2013 at 6:17 pm

Thank YOU for participating in the campaign, Tam! It’s my pleasure to organize. I look forward to seeing the NN Support Group of San Diego County’s photo. This is AWESOME news! Thanks again, Julie

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Franziska August 20, 2013 at 6:42 pm

Awesome :) Glad you received my picture. It’s fantastic to see how many people join this project :)

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TheDreamer August 25, 2013 at 7:14 pm

So, we’re down to missing Montana, Wyoming, North Dakota, South Dakota, Nebraska, Alaska, Mississippi, and Vermont?

Will we get all 50 states by September 1st?

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julie August 26, 2013 at 4:57 am

Hi The Dreamer – we just got Nebraska so now we need Montana, Wyoming, North Dakota, South Dakota, Alaska, Mississippi and Vermont. I really hope we can get all 50 states by Sept 1st! Fingers crossed. Thank you for following & supporting the campaign. Big smiles, Julie

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scott orn August 27, 2013 at 11:56 pm

what a great campaign. I came across your blog via Tumblr. I run the Living With Narcolepsy support group and posted your post on our site so others would see it: http://livingwithnarcolepsy.org/forum/topics/narcolepsy-not-alone-campaign

Great work!

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julie August 28, 2013 at 1:41 am

Thank you so much, Scott! I’ve really enjoyed organizing this campaign – it’s brought more joy to my life than I ever imagined. :-)

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rui silva August 31, 2013 at 12:35 am

Está um album muito bonito, pena é que a bandeira Portuguesa não aparece, pois nós por cá também temos que sofra com a doença, eu sou um deles. Obrigado

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julie September 9, 2013 at 2:51 pm

Rui – Espero que possamos adicionar o da bandeira portuguesa para a campanha!

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Beth K. September 5, 2013 at 5:16 pm

Hi Julie:
Just want to say “WOW” to everything you do for PWN and being an amazing advoce!!! I am so excited about the photo campaign!! My daughter has had Narcolepsy with Cataplexy since she was 9 years old. It has been an incredibly challenging journey for her but we are thankful for the positive strides that are being made both in terms of medications, diagnosis, and awareness!! Our hope is for a cure to occur soon especially with the FDA being on board to help. It would be SOO WONDERFUL TO FIND A CURE and not to just treat the symptoms. In the meantime, THANK YOU THANK YOU THANK YOU FOR UNITING THOSE WHO STRUGGLE WITH THIS MEDICAL CONDITION!!!

THEY WILL NEVER EVER BE ALONE NOW:)
KEEP UP THE MARVELOUS WORK YOU ARE DOING AND I HOPE TO HELP ALSO. WE CAN’T GIVE UP THE FIGHT!!! THOSE WE LOVE DESERVE THE BEST LIFE POSSIBLE!!!!

HERE’S TO BRIGHTER AND BETTER DAYS AHEAD!!!!!!

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julie September 9, 2013 at 2:22 pm

Thank you for your support and encouragement, Beth. I hope for a cure soon too and I’m encouraged by the FDA’s interest as well! It’s a joy and honor to raise awareness. It’s kind comments like yours that remind me why I do what I do. :-)

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Tanya September 8, 2013 at 11:19 pm

We did our group one yesterday in Brisbane, Australia =) was a fantastic day!!!

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julie September 9, 2013 at 2:29 pm

Hi Tanya, I LOVE the photo from the Narcolepsy Support Group Australia. I will add it to the gallery in my next round of updates in the next few days. Wishing I could’ve been at your meeting in-person, it looks like a lot of fun! Big smiles, Julie

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Felicia January 17, 2014 at 10:44 pm

Giving a shout out to all of my fellow people with narcolepsy in Connecticut. Would love to get together sometime and discuss what doctors are the best to see as well as best practices for managing narcolepsy.

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Josh Josh March 30, 2014 at 10:40 pm

Julie,
By connecting to the above experiences and voices has given me strength,determination and zeal to fight on.I have just came across your site.I was once mis-diagnosed by a psychiatrist as a victim with suicidal tendencies and he gave me drugs#### to”suppress it”but thanks to your website that i came across accidentally .Though this condition has caused my career(i dossed off in two interviews=potential employer and needless to say i never got the job) Socially i have had a break up in relationships as no one wants to understand me.
When will narcolepsy be demystified in Africa and Kenya in particular?
For how long shall i live in a culture of silence?

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tam kozman July 3, 2014 at 7:55 pm

Hi Josh, I’m somewhat aware of the frustration faced by Kenyans with narcolepsy; I understand it is still widely believed to be a curse! Do you know about the Facebook group “Kenya Narcoleps Awareness Group”? https://www.facebook.com/groups/586473958041030/
They are fighting very hard to raise awareness of narcolepsy!!! Best of luck to you all! :-)

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tam kozman July 3, 2014 at 7:59 pm

Here’s one more Facebook group, Josh:
Narcolepsy Awareness in Kenya

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Erin June 26, 2014 at 12:44 am

Just sent mine! Thank you for being a constant source of inspiration, Julie!!

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Marga Kritzinger July 9, 2014 at 8:55 am

Hi Julie

I am curious – if we join the campain, do we get to see who our fellow Narcolepsy: Not Alone friends are, especially in our country? I am from South Africa and would love to be able to make contact with fellow PWN in SA :)

Thanks! Marga

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Lindsay August 17, 2014 at 9:34 pm

Hi Julie, I am looking to help a family member connect with others whom have narcolepsy in BC Canada. There is lots support and articles for the US and nothing for Canada (let alone B.C.). Any help would be great! Thank you so much :)

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Kinda October 17, 2015 at 2:09 am

I’m thrilled to find this site! Thanks for the awesome work that you are doing here. I have never met another person with narcolepsy and did not know how important that was to me until I saw the picture gallery. Thank you!

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Ines Illgen November 5, 2015 at 5:08 pm

Have not seen any posts by “seniors” and I don’t mean high school or college. I’m 68 yrs old and was finally diagnosed with hypersomnia around the age of 60 after my primary care doc referred me to a sleep clinic. I was prescribed Provigil and because of the expense I opted to get only a week’s supply instead of one month. On the third day I developed cataplexy. Having been a registered nurse for 40 yrs I recognized it immediately and upon recovery after a few hours reported it to my docs, pharmacist and manufacturer. I’d been asking my doc for years to let me try Adderall, but he refused because of my hypertension. I eventually had to take control of an increasingly intolerable situation. I was falling asleep at work. My coworkers were extremely supportive and would let me “nap” in an empty room as long as possible. I’d immediately go into deep REM sleep. My now adult kids had been on Adderall for ADD so I took 5 mg and kept a close eye on my BP. Eventually I got positive results with 20 mg and no increase in blood pressure. I informed doc. He, of course, disapproved but did write me a script. I now take 20 mg upon awakening and 10 in the afternoon. I hesitate to send this post because I do not want to suggest this is a safe thing for anyone to do. In retrospect I should have gone back to the sleep clinic physician instead of my primary care doc. But he was no longer there and the clinic was in transition, so I used that as an excuse. I now am scheduled for another study because based on her review of the previous studies the new clinician tells me I have sleep apnea and narcolepsy. I’ve never again had an episode of cataplexy since stopping the Provigil. I am now retired and am living in the continuing care retirement village where I once worked. Moving here is a slow moving drawn out process because of many other medical issues as well as my sleep disorder, whatever its name. I’m happy to have found the magazine article and the many posts because like so many others I’ve never met another narcoleptic.

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