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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

82 Replies

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  • lyn4668
    lyn4668 Chrisy

    Posted

    My initial symptoms began this summer while using our pool a good deal.   Can you safely swim in chlorinated water or does the chlorine exacerbate the ls?
    • Chrisy
      Chrisy lyn4668

      Posted

      I have found it does exacerbate mine.  I have given up swimming which is a shame as I have mobility problems.  I have even found salt water aggrevates it.  Some others have found that using a barrier cream before swimming helps but I am too frightened to try this.
  • winifred02134
    winifred02134 Chrisy

    Posted

    Hi Chrissy, my consultant told me its ok to go in swimming pool as long as no sign of LS visible , so far l have not tried it out .
    • Chrisy
      Chrisy winifred02134

      Posted

      That Is interesting.  Might try again although I am not keen to be so sore again.
  • Morrell1951
    Morrell1951 Chrisy

    Posted

    Chrisy, the hard truth is that LS is shunted aside because we basically only buy $50 worth of steroid meds a year, maximum (Wilma, I know it's a lot more in Oz). Only the money spent on prescription drugs functions as a motivator for research. Supplements, moisturizers and health foods aren't part of the picture. Rheumatoid arthritis patients who take prednisone are much better customers that we are.
    • Chrisy
      Chrisy Morrell1951

      Posted

      Maybe if they actually found a medication that cured totally and not just treating it, they would then charge a lot more for the medication, but the medical profession will not then want to prescribe it because of cost restrictions and the pharmacies wouldn't make much profit from a cure.  It would be nice to have a treatment that would actually work long term not just for a few days.  Sorry I'm just feeling a bit negative at the moment.  I have a tear at the front of my bits today and it is so sore.  I know it is because I went a day too long between treatments.
    • Morrell1951
      Morrell1951 Chrisy

      Posted

      Chrisy as much as I disagree with people who are prematurely convinced that various alternative remedies and diets for general auto-immune troubles may cure LS, I do belive that what it will take is a breakthrough with research into the immune system. I don't think there will ever be a magic expensive cream.
    • Morrell1951
      Morrell1951 Chrisy

      Posted

      Bummer. That's the worst spot to have a tear, Chrisy.
    • Chrisy
      Chrisy Morrell1951

      Posted

      Tried Manuka Honey between conventional treatments. Magic healed quickly.  Not saying it will always work but I was desperate. Still used the Clob though to cover all bases/
  • sarah33278
    sarah33278 Chrisy

    Posted

    The disease is not as rare as the medical world seem to believe.  It is staggering to find the amount of women online who have LS and LP.  Perhaps if we all wrote to our Medical Board Authority in each country bringing it to their attention, perhaps something may eventuate or even asked what the reported number of LS and LP was in country.  Thanks for sharing.
    • Chrisy
      Chrisy sarah33278

      Posted

      445 members in this website are interested in Ls forum,  Yahoo group for Ls has over 10,000 members, there are many more groups I am sure.  This certainly affects enough people to raise the question about what causes it and to promote an investigation into its causes and treatments.  I wish I was young enough to train in the medical profession and get interested in this problem so that I could do some investigating myself.  There is nothing more motivating than being a sufferer yourself.
  • hanny32508
    hanny32508 Chrisy

    Posted

    There's no cure, yet.  However, if we keep sharing our findings - wouldn't that make a difference.  Would it be possible to invite a doctor interested in this kind of disease to our forum?  A scientist who could help think about why some things make our life's better.  We somehow need to build a connection, a link to perhaps auto immune researchers.  

    What road could we use or build to attract their attention?

    • Chrisy
      Chrisy hanny32508

      Posted

      I think we should all give information of this site to our specialists and ask if they would look it over and possibly from time to time and comment on some posts if they thought it appropriate.  Might be worth a try. 
    • hanny32508
      hanny32508 Chrisy

      Posted

      For now I have passed some of our findings on to my family physician and encourage to pass it on to his LS patients. 
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