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Are polls ever done on this site?

Posted , 8 users are following.

lynne1945
lynne1945

hi,

I'm wondering if anyone has ever collated info from here regarding LS. I know we have the start up questions page, but is it ever put together and the answers posted? Plus even more personal stuff, maybe anonymously? How it started for you, what age, any relatives have it, ethnicity, just loads of stuff. I know having common denominators doesn't really help us dealing with it, but it could be interesting and would maybe be even fascinating.

For instance, I read recently on another blog that polled over 100 people that 99% of them were blonde, brunette and redheads and skin type was very fair, fair and medium! 

Cursing my fair skin right now! cry

0 likes, 16 replies

16 Replies

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  • lynne1945
    lynne1945

    Posted

    I meant on another site not another blog! 
  • Morrell1951
    Morrell1951 lynne1945

    Posted

    Somebody did a survey on Survey Monkey last year. Nothing really conclusive. The thing to do is take the bull by the horns and build a free Survey Monkey questionnaire and ask the moderator if you can post a link to it it as a topic. There were a handful of us discussing it for a long time, but then one person just did it. Maybe you'll do it better!

    I have dark hair and skin that burns brown. So much for that theory.

    • lynne1945
      lynne1945 Morrell1951

      Posted

      Oh! I didn't realise that one had been done. I have never heard of Survey Monkey but have only just joined the blogging community three months ago. I just google Survey Monkey? I don't think I could do it better, if at all!

      Morrel, I thought you were the moderator! Never knew anyone else here to be so knowledgable or helpful ... I just assumed.

      So the fair skin thing just got shot down .... but then you may be that 1%! 😐

    • lynne1945
      lynne1945 Morrell1951

      Posted

      Oh good Lord, that came out wrong! I do know loads of people here are helpful and knowledgable and I appreciate every one of them!

      I only meant that you know the answers to most of the questions and you always greet new people so I assumed. 

      I'll shut up now .... 😀

    • Morrell1951
      Morrell1951 lynne1945

      Posted

      I don't think anyone will take offense, I do sort of make this forum my substitute for getting out of my house in the bush and doing some actual volunteer work.

      Alan is the webmaster and moderator for the whole site, a huge job. If you need to ask him something he's EMIS, at the top of the discussion list.

  • virginia45494
    virginia45494 lynne1945

    Posted

    Hi.  Firstly, you are making me smile!  I didnt find your comments wrong or silly xxx

    I downloaded the results from the survey monkey survey that was done as I was thinking of building on it, also.  Happy to share what was there and also happy to help with a fresh survey if that is something you are interested in doing.  I use survey monkey alot.

    Virginia

     

    • lynne1945
      lynne1945 virginia45494

      Posted

      Hi Virginia 

      I looked at Survey Monkey and did a free sign up but then it started getting tricky for the old brain. I assume I have to start paying for results of surveys, otherwise it's just setting up a survey yourself. I can't seem to negotiate my way round it anyway. Maybe you could tell me how to find the results of that LS survey on there? 

      Thanks for your kind comments. I am interested enough to read results of a survey but too lazy and old to run one! X

      Lynne

    • virginia45494
      virginia45494 lynne1945

      Posted

      I will PM you with my email address and I can send you the results of the previous survey by separate email.  I dont think you can find the old survey on there anymore, there was a discussion about taking it down.

      (Survey Monkey = I'm your women!)

      Cheers

      Virginia

    • andrea58721
      andrea58721 virginia45494

      Posted

      Thanks for bringing this forward Virginia. I'm sharing this with my specialist to prove to her I'm not the only one who wants to tell my story and maybe get the ball rolling on further investigation re: LS
    • andrea58721
      andrea58721 virginia45494

      Posted

      I'm thinking about survey 2 to follow up on Alan's suggestion (the moderator - below). I'd like to see a summary of the various meds that people use, daily routines - sitz, washing up, drying, peeing, creams, gels, etc. Vitamins used. Dealing with stress. Outcome of reducing/increasing stress levels. Diet. Outcome of messing with diet. Worries people carry around with them. The biggest, scariest unanswered questions they have. In other words, a lot of the stuff we talk about here.

      Are there limits to the size of responses you can put up on survey monkey, do you know?

      Thanks.

  • dana67195
    dana67195 lynne1945

    Posted

    I am Irish descent and tan easily, 71, diagnosed in April with LS via biopsy, probably had it longer, also got GA on hands diagnosed same time.  I was bitten by a tick about 4 years ago.  Read recently that those with LS and Granuloma Annulare have "borrelia" in samples.  I need to do more research on this.
  • Emis_Moderator
    Emis_Moderator lynne1945

    Posted

    The previous survey is still on the LS group homepage under the New to LS discussion here:

    https://patient.info/forums/discuss/browse/lichen-sclerosus-1341

    or direct link is

    https://patient.info/forums/discuss/lichen-sclerosus-survey-results-449532

    It was going to be taken down as Paula who did it thought the results would not be available after a time period but they are still available so the discussion has been left on the LS page.

    Hope this helps and let me know if anyone wants to do another, I'm sure we could add a link once checked.

    Regards

    Alan

    • lynne1945
      lynne1945 Emis_Moderator

      Posted

      Hi Alan

      Thanks for the info re the survey. 

      Virginia did email the survey, most of it was there, but the individual responses were not there. Here they still are.

      if that link was always there  then I have been missing it every time! 

      It was very comprehensive. 

      Yes yes good idea Andrea, would love to see more answers to those questions you raise and more. If people of a generation ago used those ghastly feminine sprays for feminine 'odour' or scented sanitary pads or even used a lot of talc around there, my old gynae stopped me years ago from all that, said it was so bad. Would like to know ethnicity as it seems true of what I have picked up that not many or any African America or Polynesian or very dark skinned races have the disease. Maybe they don't come forward.

      Lastly, I would be happy to be included in any study or share my struggle with this disease.

      kind regards

      Lynne

       

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