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Posted , 7 users are following.

linda94703
linda94703

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...

0 likes, 15 replies

15 Replies

  • ann67814
    ann67814 linda94703

    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.

  • dani8979
    dani8979 linda94703

    Posted

    No interested in support groups at all...these forums offer all the advice and support you need to guide you through treating LS. 
  • Guest
    Guest linda94703

    Posted

    Where in the states are you? I am in Connecticut.
    • diana71766
      diana71766 linda94703

      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.

    • linda94703
      linda94703 diana71766

      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...
  • mary_lou60460
    mary_lou60460 linda94703

    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.
  • sheryl23096
    sheryl23096 linda94703

    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

     

  • Blueplum
    Blueplum linda94703

    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
    • linda94703
      linda94703 Blueplum

      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...

  • bonnielow
    bonnielow linda94703

    Posted

    It's a great idea but seems that there is really no one very close by.  Chatting on the phone is always a possibility, but another great way to connect with other sufferers is a good support group.  I am in one on facebook.  It is very active and has a ton of supportive women.  https://www.facebook.com/groups/LichenSclerosusSupport/

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