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Numbers of lichen sclerosis sufferers worldwide

Posted , 12 users are following.

Chrisy
Chrisy

I was reading an old post about swimming pool water and the effect that chlorine has on ls.  Further down the posts I noticed Barking had submitted a post giving figures of how many people suffer with Ls. (1:30 elderly and 1:59 generally).  I suddenly thought how many, approximately, is that actually world wide.  I took figures of female only occupants in the world last July 2013 and applied these results to that.  The actual figure of women in the world at that time was 3,523,843.881 approx.  Dividing that by 59 came back as possible sufferers of lichen sclerosis are.......59,726,167, nearly 60 million.  If we add men to those figures it will be many more.  I do not see that there is not enough sufferers to make this a worth while disease to investigate on a larger scale.  If these figures are correct then the problem is far greater than we imagine. The cream, moisturiser, manuka honey, coconut oil etc that we purchase to combat the symptoms from manufacturers mean they must be making an absolute fortune from us and the NHS in uk and other like organisations including insurance companies worldwide. 

I just thought this may be of interest to others who I am sure have wondered how many people actually have this problem.  I do not vouch for these figures being totally accurate as I am just using others figures to get an idea.  We all know that estimates are that estimates and can be wrong but it is interesting to have an idea.

7 likes, 82 replies

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  • Holiday_girl
    Holiday_girl Chrisy

    Posted

    God so many and when I was suffering for 12 years I thought it was only me had these symptoms none of my friends were experiencing them. I feel fine now using the Hydramol at night as it was ruining my cloths and use Dermovate approx 1 a fortnight if I feel a little itch. Lovely to be free of the itch just drove me mad.
    • Chrisy
      Chrisy Holiday_girl

      Posted

      I was shocked by the numbers.  Makes you wonder why nothing more is being done for us.  I suppose there is no way to check these numbers unless the medical profession decides to find out. I did try to get the tv interested but no one seems to be interested as it is so embarrassing for people to talk about it.
    • Holiday_girl
      Holiday_girl Chrisy

      Posted

      Hi Chrisy nice to speak again been awhile. Went for checkup the other week and she was very pleased said go home and celebrate with a glass of wine a said brandy and coke would be better. My friends are so pleased I have got it sorted but keep telling me I should have done it years ago have to agree with them. Take care Carol
    • Chrisy
      Chrisy Holiday_girl

      Posted

       Hi Carol,  Yes it is lovely to speak again.  Congratulations with your good news.  I am sorry I have been busy fund raising for my local womens charity.  My favourite tipple. Brandy.mmmmm! Have to have one now.....

       

    • Holiday_girl
      Holiday_girl Chrisy

      Posted

      Hope you enjoyed your brandy. What charity are you working for hope its doing well. Pouring with rain here in Romford this morning won't be doing anything in the garden today. May carry on with winter clean the kitchen just do a bit now and then or sit and do some knitting , maybe a bit of both. Take care Carol 
    • Chrisy
      Chrisy Holiday_girl

      Posted

      Sorry Carol, I missed this comment.  I worked for an Education Charity that works with disadvantaged adults in the community called Groundwork.  I have had to resign for this year until after my recovery from my operation.  I miss it very much.  I loved teaching them.
  • carmarie
    carmarie Chrisy

    Posted

    I find those figures very interesting Chrisy. Not enough investigations done about this disease, common thread with a lot of people is it starts with menopause. You would think that there could be a cure by now once the disease is looked into. It could be a hormonal problem affecting the skin or anything.
    • Chrisy
      Chrisy carmarie

      Posted

        I know I had it as a young woman but a hysterectomy kicked it into a more aggresive time.  They think it is auto-immune but I agree that hormones seem to be linked for many.
  • margaret55973
    margaret55973 Chrisy

    Posted

    its not often I reply to the groups comments, mainly because im not very good with the computer. i felt i needed to reply to Chrisy, how right you are, I have made this same comment to my husband. I dont think its fair to the many millions of people to have no hope of a cure, just because those who could help dont think there is enough of us suffering, and i mean suffering. What has to happen before we are considered for someone to help end our misery.
    • Chrisy
      Chrisy margaret55973

      Posted

      I have tried to get tv interested (loose women UK) but no takers.  I have written to magazines but never seem to get any attention.  I can't even confirm these figures as the medical profession use confidentiality to prevent me confirming them.  I think the only people who could actually find out are the medical profession.  I am going to mention this on my next visit to the consultant dematologist in January.  Also these figures if true do not show the possible millions that may be affected but are unaware as yet.  It is frightening that nothing more is being done.
    • Pixel_Pixie
      Pixel_Pixie margaret55973

      Posted

      It's my guess that there is not enough research for a cure because of a couple of factors. The first being that it isn't killing people in high numbers so they figure people can just "live with it" and it isn't an emergency in the researchers mind.

      The second reason I am guessing, is because it is dealing with sexual body parts which makes it a taboo topic for so many. It took years for breast cancer to come to the lime lite because it was a hush hush topic for so long. It wasn't until people started no longer being afraid to talk about it and bring it out into the open that it started to get any attention. 

      If anything is to be done about LS in the medical world there needs to be more noise made about it.... the kind of noise that ADLS got with the bucket challenge earlier this year.   If people don't know that LS exists then they can't support it.  

      Looks like this disease needs a good PR manager. 

       

    • sarah33278
      sarah33278 Pixel_Pixie

      Posted

      Yes all your facts are true LS is a very sensitive issue and more needs to be done about it.  Also is the issue of when we age, get really sick and can no longer adequately care for ourself is concerning as we have to make the decision whether to trust someone else to treat the areas or give up treating the areas all together, worrying.  I wrote a very detailed letter to my GP Clinic about the matter as well as to General Practitioner Association and also Gyneacological Association to try and highlight the issue as well as highlight the misdiagnosis and delayed treatment from gyno's who just don't pick it up.  The General Practioner Association responded very well but the Gyneacological Association was poor to respond with any action plan, sympathy and was not willing to investigate the matter any further.  It really is a kick in the guts from the medical world and in particular the male practitioners/specialists etc who think its not important enough.  One leading hospital also turned a blind eye to it which is quite sad.
    • Chrisy
      Chrisy sarah33278

      Posted

      Thank you for this information.  I talk about this to many people and am starting to get over the embarrassment I feel.  It is great when you find a fellow sufferer and can talk over any problems you get.  I do not mean great that someone else suffers from this dreadful condition.  It is always surprising to me that I often talk to medical professionals who do not know about this condition.  I have to see specialists about other non-connected conditions and when they ask for other conditions I suffer invariably they have never heard of LS before.  They are though quite interested to hear what it is.  We all need to be more open so that many more will hear about this condition like breast cancer.  As it was people talking about it that has lead to todays treatments being so improved.
    • Morrell1951
      Morrell1951 sarah33278

      Posted

      I've noticed that this forum has moved to the top Google hit for Lichen Sclerosus. Just our activity here is creating a buzz.

      Sarah, you've hit upon the hardest fact. My sister's a palliative care nurse and now that she knows about my LS she's noticing very old women dying of vulvar squamous cell carcinoma stemming from undiagnosed and neglected LS. Interestingly, my sister has psoriasis worse tham mine and she had surgery for vulvar SCC twenty years ago, but she insists she doesn't have LS.

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