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.
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.
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.
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.
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?
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, 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.
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.
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.
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.
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.
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.
That Is interesting. Might try again although I am not keen to be so sore again.
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.
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.
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.
Bummer. That's the worst spot to have a tear, Chrisy.
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
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.....
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/