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Have any of you ever spoke on the phone or tried to meet to form a live support group? I live in the states and would love to talk or meet up with someone to share this experience with and provide support when they need it. Please let me know if you are in the states or Canada and are interested in doing this. I only know of one support group in the US and it is the Yahoo...

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15 Replies

  • Posted

    I am not interested in support groups but do have private chats online with someone I linked up with through this forum using the the private link. Hope that helps and you manage to set up a group.

    Good luck k.

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  • Posted

    No interested in support groups at all...these forums offer all the advice and support you need to guide you through treating LS. 
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  • Posted

    Where in the states are you? I am in Connecticut.
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    • Posted

      Wow seems so far away . But yet I feel so close. Have you noticed we're not alone. Now to get it more recognized in the media. I bet it is so many more woman out there suffering.

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    • Posted

      There are many more according to the Dermatologist. I could feel better about this if I could get it and now other stuff under control. I am having other issues now and not sure what they may mean yet, but it is not feeling good. .... I wonder will I ever be able to again just take long walks and go on vacations...
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  • Posted

    Linda i met 2 ladies through the forums here. We are there for each other. I am the only one who has LS and HVS2, they have HVS2. We use chat or the phone to talk.
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  • Posted

    I'm not really interested in support groups or meeting up in person either. I'm rather shy and I prefer to text or talk on here. It's much much easier for me talk while typing like this, but good luck to you in setting up meetings. razz

     

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  • Posted

    Hi Linda, think it’s. Great idea, I’m like millions miles away in the Uk. Think we need something like that here too. Something like a what’s app group or something
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    • Posted

      Thanks Blueplum, there are just so many aspects to this disease and it is hard to explain the day to day episodes one is going through and therefore it difficult to know what to do or not do in activities etc.... I don't even know where I am at stage wise....  I am proud of the UK for really taking notice of this disease...hopefully more studies and better treatment can develop...

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