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Posted , 9 users are following.

lyn4668
lyn4668

just wanted to add something which may or may not help anyone feel better.  I was playing tennis today with a dermatologist, not mine, and asked if she has seen much lichen..planus and sclerosus.   She responded, "oh, yes, I see both and it is actually quite common".  We live in TN and I did not expect that response.   So if misery loves company, which I know we do not, we do have company.

1 like, 14 replies

14 Replies

  • hanny32508
    hanny32508 lyn4668

    Posted

    I suspect that we have a lot of company Lyn.  If only we could get this out in the open.  It will need to become public knowledge just like breast cancer. 
    • hanny32508
      hanny32508

      Posted

      To add to that - I would like to find gentler methods for LS than the methods used to "cure" breast cancer.  There is much to be desired yet.
  • anna80050
    anna80050 lyn4668

    Posted

    i spoke to my gynae last week and asked the same question..just wanted to get a feel for how many patients she has with LS...she told me that she sees about 10 a week...I dont speak to my girlfriends about it...it's an embarrassing topic for me...that's why I love this site!
    • Guppy007
      Guppy007 anna80050

      Posted

      TEN A WEEK!!!!! isnt that a LOT... maybe LS is actually becoming more prevalent, I always thought it was a rare condition, and so more importantly, I wonder whats changed to make that happen. 
    • hanny32508
      hanny32508 Guppy007

      Posted

      If every practioner or gyna has approx 5 patients .... 

      I don't think it is a rare skin disease either.  

      What's changed is that we start to talk and ask questions.  A good start to turn things around and attract perhaps some attention?

  • Morrell1951
    Morrell1951 lyn4668

    Posted

    I asked my gynae how many LS patients she has. Dr. Goldstein makes his 1200 sound like a world record. My rural Canadian gynaecologist has 1000 LS patients. I don't think it's so rare at all.
  • Jeepers
    Jeepers lyn4668

    Posted

    When I first saw my GP about LS  twelve years ago she had never come across it before, but she knew about LP which I had already had.

     When I saw her one year later she told me she had had several more cases since she had first seen me with it, so I think it is on the increase for sure.

     

    • Morrell1951
      Morrell1951 Jeepers

      Posted

      My guess is that it's on the increase because baby boomers are old now and most new diagnoses of LS are in post-menopausal women.
    • Jeepers
      Jeepers Morrell1951

      Posted

      Good point Morrell as I am mid seventies now and got it soon after stopping HRT.

      I think previous generations didn't talk about intimate things openly , and might have suffered in silence.

    • Jeepers
      Jeepers Morrell1951

      Posted

      Blabbermouths yes smile  with the internet too !  - easier to talk on - easier to find each other....forums.  So many have said how good it is to know they are not alone.

      Viva the internet.

  • TK31
    TK31 lyn4668

    Posted

    My doctor at the LS clinic last year told me it was very common. I thought he was trying to cheer me up as all the info says the opposite. I'm a baby boomer too by the way.
    • hanny32508
      hanny32508 TK31

      Posted

      One doctor called auto immune diseases the new epidemic.  Don't know whether LS was among his knowledge though.
  • Chrisy
    Chrisy lyn4668

    Posted

    Don't you think that as with a lot of things it is that more is known now adays.  I was thought to have a reaction to washing powder, sti, irritation cause unknown, amongst other answers until a young doctor recognised the signs of ls.  I just think that slowly more and more doctors are getting to know about this condition and recognise the signs.  I think people have always suffered as I am sure my Nan did and she died in the 70's.  I just think Doctor's didn't know it existed.  When was this condition discovered, does anyone know.  If it is a recent discovery then that will explain things.  It is a delicate matter that many women would not have discussed years ago but suffered in silence.   Nowadays women are more likely to seek help for the condition.  The more we talk the more will know about this and the more women will get treatment and help.  The more that get treatment the more will be spent on this condition including research.
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