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herold

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Reply with quote  #31 
i would like to reply to the person in arizona looking for a group i to am looking for support i live in globe az. if need or want to chat my e mail is HaroldGreen228@yahoo.com. ivw had CVS now for 18 yrs and just diagnosed this year


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herold green
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herold

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Reply with quote  #32 
to kiss the chef   i live in globe az. and am also a cvs sufferer and we do need a group in az. because this disease is so UNKNOWN here i hate going to the hospitals cuz they dont know anything about us  there is one dr. in az. who knows us his name is DR>REED at MOUNTAIN VISTA HOSPITAL he is a G I specialist. and he told me im the only one in az. he knows with CVS.
HaroldGreen228@yahoo.com

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herold green
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Dades_mom

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Reply with quote  #33 
First I want to say how excited I am to find this information for our son who is 13!  Is there a group in the North DFW area that meets for support with children that have CVS?


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colene bryand
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ginny

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Reply with quote  #34 

Please contact Ruth at the CVSA Office 

CVSA@cvsaonline.org for information on forming a support group.

There is an online meeting by no charge phone call every Wed night, the instructions are pinned to the Main Forum.  This meeting is open to all and the call is no charge to those in the US and Canada.

There are on occasion Sat AM calls.

Please take the opportunity to join in on an Accuconference Call for support.



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ginny CVSA Moderator
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Dragonflygurl63

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Reply with quote  #35 
Quote:
Originally Posted by ginny

 

Possible Support Group inOregon.

 

We have a person in Oregon who would like to start a supportgroup but she needs you!

 

If you are interested, please contact Dana Kessler fromWaldport, OR at 541-563-4136

 

 Hi, my name is Denise and I am interested in helping you start this in Oregon.  My son Mike was diagnosed with CVS last September and is having a very rough time, especially lately.  my number is 503-863-1399 and I will be texting you.

 

 

 


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Denise M Mendoza
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Dragonflygurl63

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Reply with quote  #36 
My name is Denise Mendoza and I was diagnosed with CVS in 2011.  I had my last episode August of 2013, but 2012 was pure hell.  I am interested in starting a blog for the Oregon area because now, my son Mike who is 24 was just diagnosed with CVS last September.  I feel a strong urge to help as many people as possible with this debilitating illness, especially after seeing my son go through his own hell.  I am especially concerned about how CVS patients are treated and "labeled" especially if they smoke marijuana.  I have never felt so helpless and I am beyond frustrated with medical care-  

If anyone has a suggestion or would like to give me advice, I am all ears!

Stay Healthy
Denise

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Denise M Mendoza
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kidsmom

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Posts: 23
Reply with quote  #37 
Any online meetings going on for parents or caregivers? Please really need to talk to people and find out. i am in Columbus OH and seems like I am the only one from here. My son was misdiagnosed for last 10 years and still I am not sure if diagnosis is correct and are there any medicines that can help.
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ginny

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Reply with quote  #38 
Please look at the pinned message at the top of the "Main" Category page for information on the telephone conferences.  Right now a member is running a meeting every month.



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ginny CVSA Moderator
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