Any other males with lichen sclerosus that can chat with me?

Posted , 4 users are following.

Hello, since there is no male lichen sclerosus forums im wondering if any other males can comment on here and we can create a chat group on skype or something

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  • Posted

    i'd be up for that, just Pm me. i think the more of us that get together, the better chance we have of finding a possible cure for this horrible disease.

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  • Posted

    We could start a Male specific - i.e. BXO / LS forum on this web site. I think the benefit of it being on here is that at least it has some level of credibility among the Medical Profession who use the Information Resources elsewhere on this site to deal with actual patient issues. Yes, the Forums are the patient perspective, but you will get the occasional medical professional suggesting their patients check the forums.

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    • Posted

      if we could get the site to create a BXO specific category as opposed to a new thread in the LS category it would be fantastic. not sure if the site will do that though.

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    • Posted

      I would suggest it would make more sense to place an additional link from the "Penis Disorders" Forum Links - as that what BXO actually is and I have yet to hear of a male that has been effected anywhere other than on the penis with BXO or even LS type symptoms elsewhere on the body.

      I would suggest we would all need to agree the perspectives we were taking on BXO and I cant think of anywhere better to start than the major posts on this Women's Health > Lichen Sclerosus forum that Nancy KB has provided.

      I can provide links to these for you guys to follow .... and I would suggest others that we need to be aware of too and perhaps use the most relevant information for the Male perspective ...

      You then need to get the name of the permanent link clearly thought through so that it encompasses every likely possibility, such as ...

      Penile Lichen Sclerosus - Balanitis Xerotica Obliterans - Balanitis in Men

      and so on - then you would have a permanently pinned message that succinctly summarises the basic information we want all readers to know as these could be people such as sufferers themselves, people who are not sure what they have, and may actually have a different condition, even Doctors who have a patient with them at that time wanting to pass-on to a patient a useful place to get the perspectives of other sufferers. They could be partners or parents of a sufferer for example.

      Once you have the basic openning detail sorted in terms of the text that would appear you would then need to get the links to other sources of the MOST essential information you want to draw attention to .... these would need to be researched and agreed upon. So these would be the likes of a link to NHS based information, professional bodies such Urology and Dermatology professional associations. I would suggest a link to the main Women's Health > Lichen Sclerosus 'home page' would be in order as women will Google and see the Male Link we create.

      Once you have all this sorted (and no-doubt other things too!) there are two approaches I would suggest to get a permenant link ..... contact the person who set up the Female Lichen Sclerosus Forum via Persona Message and ask them ... or, the other potential is to post a short notice on the Penis Disorders site - then click on the "Report this post" flag and you specify to the moderator what it is we want to set up and the need for a New Additional Link from within Penis Disorders Forum

      They will then specify whether changes and updates can be made to the initial pinned message - they are unlikely to grant administrator rights, even to one of us for even that single pinned message text box ...

      What we can do is once we have the core group of us sorted out who are going to create this, we can start Personal Messaging each other to reach agreement on what the pinned message will contain. I am not sure whether in PM you can attach text files such as simple versions of Word etc. - you can insert an image file of course so we could exchange suggested formatting for the pinned message that way ..... WHAT DO YOU GUYS THINK ... any thing I have completely forgotten about .. or even is totally dumb or not achievable and so on ........ ?

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