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Layla

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Reply with quote  #1 
Is there anyone out there who suffer with cvs around this area ?? I've never spoke to anyone or know of anyone else.. ?
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wynnak

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Reply with quote  #2 
Layla,

You may not find as many people on the message boards here from the UK. There is a CVSA UK site. You can find the link on CVSA's link page( http://www.cvsa.org.uk/). I just got their newsletter on Either Friday or Monday. Have you reached out to them? I have talked with several individuals, and families, from the UK but are unfamiliar, myself, with the geographics of each persons location in reference to yours. So although we can be supportive and offer information, if your looking for local assistance. I would try the CVSA UK site and see what they have. 

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Layla

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Reply with quote  #3 
No I haven't thanks wynnak going to look into it 😊
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wynnak

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Reply with quote  #4 
You're welcome! Hope you find great things!
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Layla

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Reply with quote  #5 
Thanks 😊
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wynnak

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Reply with quote  #6 
Layla,

Did you get in touch with them? I'm so curious!

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Layla

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Reply with quote  #7 
I've have tried no such luck as yet. You have 2 pay to join unless on Facebook which I'm not at mo..
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Andrea4d

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Reply with quote  #8 
Hi there,
This is the first time I've posted anything on here although I have been a member for a while and have spent many many hours just reading people's posts which have been so very helpful as well as reassuring.

My son George who is 5 has CVS and has done since probably birth if that's possible ?! I live in Carlisle in the U.K. Which I know is no where near Norwich but I did join as a member of CVSA UK last year and found this incrediably helpful. They send newsletters by email to keep you up to date and by far the best part of the membership was attending the family day which they hold every year.
However I'm not a member on Facebook either and CVSA UK don't seem to have a forum like this one that I am aware of. I also got in touch with the chair Robin about food supplement dosages for my son and he did get back to me, so hang in there !
Andrea 😊
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wynnak

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Reply with quote  #9 
Andrea,

That is so very encouraging! Thank you so much. I know that CVSA US is the same way. We respond even if you are not a member. We know that CVS can be hard on the financials. The message boards are here, feel free to let others know. 

Layla, I would contact them. See what they can do. 

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Layla

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Reply with quote  #10 
From what i hear it is possible. . Mine didn't start till was 16 tho but last few years been tough...I have good and bad month but talking 2 people on here help so much.. I am in progress of joining and I've have hurd about the family days just not been able 2 attend one as such a long drive for me..thanks for your response. All the best to your son 😊
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Layla

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Reply with quote  #11 
Thanks wynnak
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Andrea4d

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Reply with quote  #12 
Thank you 😊 and bless you it is such a cruel cruel illness and can be so incredibly hard x x my thoughts are with you x
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Layla

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Reply with quote  #13 
Hope you soon find out the triggers and what works best for your son. X all the best c
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Shellly

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Reply with quote  #14 
Hi Layla ,
I live in bradwell, near Great Yarmouth, only 25 miles from you ,
Shelly

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Layla

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Reply with quote  #15 
Hi. I know where that is. Didn't have any luck finding anyone else near me who has c.v . How long you been diagnosed and do you have any main triggers?
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