Lichen Sclerosus group suggestions etc

Suzanne's post has given me pause. There are many ideas on Lichen Sclorosis simply because it is something neither medicine nor the patient has solid answers on treatment or cause. I understand the emotive and frustrating need for clarity can cause polerisation in posts. This is not necessarily a bad thing as it helps provide another point of view as long as this point of view is not presented as dominant and expert. Perhaps the answer may lie in keeping to the content of the original post. If the post is open, querying and in need of information then a mix of both medical(from a patients perspective) and alternative(things that someone has found helpful and may or may not be a part of modern medicine) will be most informative. However should the original post be more reseach bound, let us say stemcell treatment updates, then alternative has no place really as it is a specific interest, and its value is gaining and informing as much knowledge as possible on this particular subject. So perhaps the wording of the division of posts might be changed to 'open' which means a discussion encompassing all and no one point of view should dominate, and 'specific posts' which means the content is based very much on the original query/research. This would not take a great deal of work but would simply need the post title to contain one of these words to clarify the need.

At any rate, I'm very much in favour of Alan's permanent pinning of basic helpful sites and leaflets – as is – at the top of the forum, since the top discussion is often the most social and alternative.

This site offers a very high standard of moderation (thank you) as well as the benefit of contact between sufferers. I can't say that I have a specific purpose for being here but one of the benefits has been making friends, exchanging tips, passing on ideas that I'm enthusiastic about (not always appreciated...understandably!)...but with time and the effort at communication I have found out who is receptive and who is not !!    ...so I can address myself appropriately; as well as actually having some fun and a bit of a laugh at myself  and at the humourous points made by others. I see this situation as something of a voyage which includes, for me, the opportunity for self development. So I'm going with it and trying to work on myself including making endeavours  to improve not only my health, but also,  my awareness,  my manners !! .. my intellect, ability to research, my courage (contributing here in this very exposed location!)  and my self-assertiveness!. This last 'asset' was unexpected. But I take great pride in my contribution which led not only to a prompting for the establishment of the Alternative Medecine section by you Alan, but also to the 'integrated' approach which currently exists on this part of the site.  

If we progress such dialogue perhaps we could work out a model  which accomodates the earlier 'feel' that some members might be hankering after....whereby those that 'want to be left alone to take their meds and to talk about something/anything else' could give some polite indication so that those of us 'enthusiasts' can aim elsewhere !!!!!!!!!!!!!!

The above said I am an intervener  ...and I know there is a quality in that. I try not to let things get neglected. I try not to turn my back. This might have included info  about the effects meds could be causing.... given as a newbie I wondered.... if I or anyone else has some information ...is keeping quiet always appropriate ? These are broad dilemmas. As in life one exercises restraint about comment... but on a website specifically for a medical condition held in common?  So what I'm saying here, I think,  is would it be helpful if people were able to indicate 'please don't comment on my meds'  or 'I'm happy with my health regime' for example by means of a symbol or something they could put up? I don't know, I'm not proposing it, but, would those who might feel this way be able to  indicate best practise (if you could design and choose any symbolism here, on this site?)... as it seems to me, that, within tech limitations, we're being invited to put forward...some proposal ...any reasonable proposal to help this site to excell.

Just to follow your design idea Alan  I'm not sure I'm entirely clear ...so perhaps if I repeat back to you the pathway that you're considering for a new user...might this help clarify?

Might it be that to come 'on-board'.... the user (initially or at every entry?)  passes through a portal where they are offered selected information and various links inorder to appraise themselves of the latest on this condition (subject to periodic revision as users might from time to time suggest?).

I can see from this inspired proposal Alan that at this point the various strategies ....to their full extent and without third party representation/misrepresentation can be laid out. I imagine that for balance you will be inviting suitably referenced authorities, articles, book titles in equal number from either 'side' ...plus something in the middle?   

It occurs to me at this time that I have a very suitable reference to offer from an alternative perspective. The author is more than qualified to comment since like all of us on the site she is intimately familiar with this disease (diagnosed through biopsy). The author experienced the condition of Lichen Sclerosis for a substantial period before being discharged five years ago by her gynaecologist. She remains in excellent health.

In addition to this achievement with her own health the author took on two case studies...who followed the principles that the author had devised. One was a 6 year old child with severe  Lichen Sclerosis the other a gentleman with autoimmunity. Both cases were also discharged within a year and both remain well.

I don't know about anyone else but I can't think of a more suitably qualified individual to be named as a resource on the subject...and of course to be placed  alongside Goldstein in the list...strategically neither above nor below ...if its possible to be so specific about links!! inorder to avoid issues with symbolism. 

This is quite timely as the book is due out so I would be able to provide you with a link (subject to all the appropriate non-endorsement disclaimers of course) and I would really prefer that the book had a link that folk could take or leave on their way in as I don't want to be otherwise plugging or peddling it but I most definitely want to find an appropriate way to share it. I should emphasize that I have no financial interest in this book but I do hope that others would join me in following its recommendations. This opens the prospect not only of a support group forming but perhaps in due course the formation of a fully validated clinical trial.

With sincere best wishes from mary 

There used to be separate wards for them !!!!!!!!!!!!!!!!!!