Ireland’s First Suddenly Sleepy Saturday Narcolepsy Awareness Event: Guest Post by Elaine Butler Armstrong

by julie on March 20, 2013

REM Runner’s Note: Narcolepsy advocate and my dear friend, Elaine Butler Armstrong recently organized Ireland’s First Suddenly Sleepy Saturday Narcolepsy Event! I invited Elaine to share this momentous occassion with us.

Elaine’s Guest Blog Post:

It’s always a joy to meet up with the members of S.O.U.N.D. (Sufferers Of Unique Narcolepsy Disorder ) and the children & young adults effected by the H1N1 Pandemrix flu jab (swine flu vaccine ), but March 9th 2013 was particularly special as we all got together to celebrate Ireland’s first Suddenly Sleepy Saturday Narcolepsy awareness event.

The event was held in Dublin and there was a great turn out from sufferers from the length and breadth of Ireland. There were over one hundred people young and old who attended this inaugural event. While it was a spectacular day and a day dedicated to Narcolepsy awareness it was also a day filled with emotion as to meet so many people who suffer from this debilitating illness, no more so than all the children and young adults who contacted this disorder through a vaccine that was given to them to combat the swine flu virus since 09/10 and to this day they are still fighting for their rights with the Irish Government for recognition. As it stands at this moment there are 52 children and young adults who have been diagnosed with this condition from the swine flu jab and sadly this number is growing by the day. (Listen to Radio Interview here)

When all these people get together it’s like one big Narcolepsy family. The love, support and encouragement shared among these people showed throughout the day with laughter, story exchanging and phone number swapping.

People with narcolepsy for years shared experiences with the newly diagnosed and help answer any questions they may have. During the day a slide show was on display explaining what Narcolepsy is. 

The highlight of the day was playing video messages from Dr. Emmanuel Mignot and Mali Einen from Stanford University, Nicole Jeray of the LPGA tour and of course everyone’s idol, Julie Flygare. These video messages went down very well with everybody who attended. The organisers of the event were very grateful that these distinguished people took time out of their busy schedules to contribute to our day.

During past gatherings and by communicating through our support groups we had noticed that there seemed to be a high number of our members that were very artistic and creative so we decided to incorporate this into our day. We encouraged anyone attending to bring along their pieces of art, paintings, poetry, writings, sculptors, photography or whatever they had to be displayed, as it was a great way for everybody to contribute to the day. For the children there was entertainment, face-painting and an art room set up so they could also express themselves.

But the most important aspect of the day was for people with Narcolepsy connecting together and just being able to talk to likeminded people about this condition and now knowing that they are no longer suffering on their own and to highlight this condition to the people of Ireland and beyond. 

REM Runner’s Final Words: Thank you to Elaine, S.O.U.N.D. and all the participants in Ireland’s First Suddenly Sleepy Saturday Narcolepsy Awareness Event. I wish I could have been there in person, but it’s wonderful to share our experiences virtually around the world. Sending wakefulness and big smiles from the U.S.A.

{ 9 comments… read them below or add one }

Mark Patterson March 20, 2013 at 5:12 pm

Dear Elaine and Julie,
Thanks so much for posting this report. I am so excited to see this international cooperative effort for rasing awareness and advocacy for narcolepsy. As a pediatrician it is heartbreaking to see anyone, but children especially, develop a chronic, life-altering condition. I hope that thru our combined efforts we can arrange for assistance for those dealing with this condition, help educate the public and medical community, and develop new treatment options. Thanks again for sharing your story!

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julie March 21, 2013 at 12:58 pm

Thank you so much, Mark! We are truly a world coming together in support of narcolepsy and that feels great…. and powerful. :-) Cheers, Julie

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Natalie B March 21, 2013 at 9:49 am

Well done Elaine & Julie. You’re both a great inspiration to all families affected with Narcolepsy. As a parent of an 8 year old with N, its really hard to empathise with him, when I really haven’t a clue how it feels. You have both given me a huge insight into the daily struggles he goes through, and given me hope that, if managed well, then it shouldn’t stop him achieving anything he wants to achieve. Thank you both, and keep up the great work xo

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julie March 21, 2013 at 7:41 pm

Thank you so much, Natalie. I’m so sorry to hear your 8 year old has narcolepsy. For possible insight on what it’s like inside the body of a person with narcolepsy, please consider reading my recent memoir. Your support of your son’s experience will help him succeed in life. With gratitude, Julie

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Natalie B March 21, 2013 at 8:22 pm

Hi Julie – your memoir has been read with enthusiasm. It was not only educational for myself and my husband, but an eye opener for the extended family that rarely see Ben at his worst.

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Elaine Armstrong March 21, 2013 at 10:19 pm

Hi all, finally I`m getting around to popping my head in to say Hello.

1st off I would like to thank Julie for inviting me to share Irelands 1st Suddenly Sleepy Saturday Narcolepsy Awareness event with her and her followers. Julie has been such an inspiration to me and a true caring friend . She has lifted and caried me in more ways than one, through her blog, video messages, her book and we have been known to have the odd private discussion to share our feelings ..lol..

Thank you Mark for your continuous support and all your effort also with raising awareness.

Thank you also to Natalie. The very informative radio interview attached regarding the development of Narcolepsy in Ireland is by Natalie’s husband James and Eilis (members of S.O.U.N.D. committee).

It is great that we are all communicating and supporting each other around the world and long may this continue.
Thank You again Julie – a true Narcolepsy advocate and a true friend xxx

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julie March 24, 2013 at 4:00 pm

Thank you, Elaine! Keep up the great work. Your friend and cheerleader, Julie

julie March 24, 2013 at 4:01 pm

Thank you, Natalie! I’m so glad my memoir has been helpful for you and your family. This means so much to me. With gratitude, Julie

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Peggy Largin November 17, 2013 at 9:44 pm

I have non-rem narcolepsy for 15 years…went gluten-free diet…no more sleep attacks…I got my life back!….hope this helps!….

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