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Other Support Groups??


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#1 Livi

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Posted 15 July 2013 - 02:10 PM

It's really disheartening that I've been to this site so many times and tried e-mailing the contact person for support groups in the DC area multiple times in the past 3 years since my diagnosis and each time received no response.   If anybody knows of other support groups where people are actually responsive, please let me know!

 

Thanks,

Livi



#2 Hank

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Posted 15 July 2013 - 06:15 PM

I know the DC group is active. Please remember that it is a patient run support group, so the person who would respond to you is juggling many o f the same symptoms as you. They do meet regularly so I would suggest just showing up at their next scheduled meeting. They often post on here and other sites when they have an upcoming meeting, often at the MLK Library in SE. Send me a personal message if you need help finding their next meeting date and I will try to find it for you.

#3 Livi

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Posted 24 July 2013 - 01:41 PM

Thanks, Hank.  I'd really appreciate if you could let me know where I could find the dates of the meetups.   When I go to "Support Groups" from the Narcolepsy Network  home page, and then click on Washington DC, this is all I get (see below).  I have tried contacting SaraiahNaps@gmail.com multiple times over 3 years and have never gotten a response.  So where do people find these meetup dates?  

 

Also, the dates that I'm seeing on the DC Forum are mostly for "Familes of Children with Narcolepsy."  This doesn't make sense to me, because it's rare for a person to actually get diagnosed until adulthood, and sometimes people with N never get diagnosed at all.  I'm not really interested in going to a support group that's all about kids, and about families finding resources for their kids.  I'm 33/female and single and would like to attend a support group for adults only, and not have to wait half a year to do so.  The last one for adults was in November 2012 according to the forum.  Sorry if it sounds like I'm being impolite -  I guess I'm just a bit  frustrated.

 

 

Narcolepsy and Hypersomnia Support Group of the Greater Washington DC Area

Meets monthly at  a DC Public Library that is Metro accessible
Martin Luther King Jr. Memorial Library
Contact info: SaraiahNaps@gmail.com



#4 Hank

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Posted 24 July 2013 - 02:01 PM

Here is their facebook link. I do not see that they have any upcoming meeting posted. I suggest trying facebook to see if you can gain any information.

It is definitely hard when a group is run by volunteers- people's lives get overlaoded sometimes. And we have a rare disease, so there are few options for us.

I hope you get some info and support.

#5 Livi

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Posted 24 July 2013 - 09:33 PM

Hi Hank,

I don't see your included link, but I closed my Facebook account recently anyway.  

I've been this long without a support group, so i guess it's just not meant to be.

Thanks alot for your help.



#6 Hank

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Posted 24 July 2013 - 09:58 PM

Sorry about that

 

http://www.facebook....181307238593357

www.facebook.com/pages/Narcolepsy-Hypersomnia-Support-Group-of-the-Greater-Washington-DC-Area/181307238593357



#7 Livi

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Posted 25 July 2013 - 11:19 AM

Thanks.  The last couple meetings were November 2012 and March 2013 so looks like every 5 months?  Which means maybe there will be one in August, although there is no upcoming meeting posted.   Too bad they seem to be all about kids though.   

 

Thanks again and take care!



#8 Hank

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Posted 25 July 2013 - 11:38 AM

Maybe you could consider starting something informal and posting a date/time. It can be hard to find a perfect fit since there are not many of us. Since you are in a metro area you may get some replies. If you build it they will come- so to speak.

#9 Livi

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Posted 25 July 2013 - 09:00 PM

Yeah, I was thinking about it, actually.  But since i've never been to one, I'm not sure what goes on in one.  i have another sleep study in a few weeks though and I made sure there was at least one other person doing the MSLT the same day.  



#10 Saraiah

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Posted 16 August 2014 - 12:20 PM

Hi Livi,
 
I'm so sorry that you emailed me multiple times and didn't get a response.  
 
I see that you were looking for the support group during the spring and summer of 2013 - I had a complicated recovery from a major health issue, and wasn't even able to do much email during those months.  The group was therefor on a long hiatus during much of 2013.  I'm so sorry about that.
 
If you are still interested in the support group, we are back to meeting periodically.  We don't have a set schedule at the current time, and simply announce each meeting as it is scheduled.  We meet somewhere between monthly and quarterly.  If you'd like to reliably receive announcements of the meetings, please email us at LivingFullyDC@gmail.com, and we'll be glad to add you to our email list.
 
Best,
Saraiah