Lichen Sclerosus group suggestions etc

Women's health
1

Hi all,

Due to ongoing discussions/messages etc lately I suggest I post a new discussion as below and I will pin it so it will be the first discussion on the LS group page here https://patient.info/forums/discuss/browse/lichen-sclerosus-1341.

For the links to useful discussions and websites - I will ask for regular contributors to suggest which are the best discussions/sites to start new users off (not too many, I was thinking 5 max). It may be worth starting new discussions x 2 as below or similar?

Lichen sclerosus - Conventional therapy

Lichen sclerosus - Alternative therapy

Note: suggestions for websites still need to meet the T&Cs, ie not commercial etc. I have just added one for now as I have been asked about it before.

I would also like to remind users here about previous communication about opinions, repeated posting of the same views and/or pushing products, web sites or names. I still have not caught up with things so if anyone knows of any discussions/threads that can actually be removed or moved to the Alt Med section let me know. I will still be scanning through the LS discussions when I have time and may start removing/editing posts as required.

Note: I do not have time nor will I get involved in any "she said this and it's wrong / I don't agree with it" type postings or reports UNLESS the posts descend into personal attacks etc. I hope you can all continue posting and help each other and hopefully the proposed new discussion below will help.

If you have any other suggestions specifically for the LS group or questions reply in this discussion (not the proposed one when it comes). This can also include questions about the possible survey/spreadsheet that was discussed before if it is still something users want.

Below is a first draft of the proposed discussion to welcome new users so please feel free to reply with suggestions or changes here. Exisiting users may want to add their potted history as I have suggested in the below once it's on site. I suggest this as it saves you having to repeat your situation in other discussions. You can just link to the discussion below once done if you do want someone to read your story/history.

Regards,

Alan

PROPOSED PINNED DISCUSSION WHICH I WILL POST

Title - New to LS - start here

Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation.

There is a patient leaflet on LS here which also has related tabs with more information, support groups etc.

https://patient.info/health/lichen-sclerosus-leaflet

Below are other useful websites:

http://www.lichensclerosus.net/

and any others to be suggested

These are discussions which you may find useful to read and/or reply to as recommended by regular users of this forum:

https://patient.info/forums/discuss/dr-goldstein-lecture-271556

and any others to be suggested

2

Hello Emis,

I would like to see continuous feedback regarding stem cell treatment.  It continues to be one of the few areas where there is a potential for full remission as far as I can see.  

3

Seems like a good idea to me.

4

could the 'causes of LS'  be accessible? was just about to add to it.

yes the stem cell info would be great....someone currently on the site may benefit from contact with those who have this info.

what period of consultation may we have please as I'd like to reflect and to confer with others? I am aware that the 'terms' of medecine have changed and are modernising in leaps and bounds. This might be difficult for those who are set upon a particular regime and who don't wish to see changes. 

Can some accomodation be made for that group?

 

5

Very good idea

6

Thank you Alan this seems to be a good way to go.

Just a thought

I personally am silly when confronted with the full address on a forum site, could the whole address be a simple button link which when pressed then shows the http etc address? I am computer savvy but there are those who may get overwhelmed by the forward slashes and dots.... Perhaps a topic heading New Research or Treatments

(I seem to have lost the rest of my comment, in case I did delete it ):- could we have a list of contributors as I will remember what was written by whom but not necessarily the thread 

i see

I wonder whether a list of contributors  would be helpful, I often remember who wrote something but not necessarily the thread

Looks good though

7

Mind blowing post Ennis.  Pass !!

8

Hi Alan, 

I've hesitated to contribute to your questions thinking that I don't have much that's helpful to offer, but maybe that is the place to start. First, I appreciate your comments and especially the help setting up discussion threads and links for the new people to check out the basic information. There is much that is repeated for new folks, and a number of people are doing a good job greeting and helping new people, but it will be good to save the helpers some repetition by allowing us to refer to the discussion thread that you have helped outline and set up. 

Regarding the struggles between the people advocating more conventional treatment and those offering alternative treatments, I do not see the dichotomy.  Yes, at the extremes there are differences, but a number of us are interested in using whatever might be helpful and makes sense to us. Since medical approaches might be conceived as being on a continuum with lots of middle and gray areas, I don't think that we can always say that someone's approach should go over in the conventional section and someone's in the alternative section. Also, I firmly believe in an integrative or functional medicine approach, which uses whatever treatments make sense, including conventional treatments, but also seeks to understand underlying causes of illness and address those through whatever means make sense, including lifestyle changes like diet, stress-reduction, etc.  

There are many reasons that people may be interested in participating in this LS forum.  Some are looking for practical help, some wish for conventional treatment advice, some are seeking emotional help and support, some are looking to explore conceptualizations and research underlying causes, some are developing online friends and relationships via a shared problem or experience.  Who is to say which is the "right" reason for this forum?  How do we make room for all of the many motivations that may make some seek such a forum and remain in the group?  I am concerned when one group or another seeks to define this forum.  I actually have considered not returning a few times when it has seemed that one or another definition of the right input was required or criticism or judgment ensued. I cannot say which camp my input would go in because I am interested in depth and breadth in understanding this disorder, and I also need some treatment to stop my symptoms from ruining my life.  I want it all, and my comments usually indicate that I am not restricted to a conventional or an alternative approach, but to an integrative approach.  I likely will no longer participate if I have to choose which section to post my comments in (i.e., either/or).

I'm not sure how to help people to tolerate each other on this site (a problem world-wide, not just here!).  I occasionally also get my feelings hurt a little, as many of us do at times. But, tolerating each others' differences would be a good goal.

One problem that has been mentioned is when people are chatting, everyone who is following may be receiving multiple emails to their inbox.  It would be nice to have the option to receive an alert that there are updates on discussions just once a day. This might be a relief for those who don't like the the constant harrassment of many new messages between those who might be in conversation.  I know that private messaging is also an option and people could be reminded of this when appropriate.  

Anyway, these are some of my thoughts--not sure how helpful, but wanted to give some input.  Will add more later if new thoughts occur.  

Thanks again for your attention to our site.  

All my best,

Suzanne

    

9

I have to say there are many good points here and it is well thought out. I am in agreement with the content. All the best

10

I am in total agreement with Suzanne00 why should things have to be moved ? We are all adults seeking our own paths to wellness, things shouldn't have to be put into different sections to please others.

Up until 100 years ago western medicine was the alternative not the coventional how things have changed. Now the alternative is shunned when it has been treating naturally for thousands of year before pharma come along.

Slapping some clob on is only treating the symptoms not adressing them as Dr Goldstein said himself. Ls is classed as autoimmune and the only way that can be fixed is by addressing the root cause, diet and lifestyle changes not clob.

I personnally do not think there needs to be a conventional section and an alternative section, for those that aren't interested in one or the other maybe they should just keep scrolling if it is of no interest to them.

All the best to everyone on their own journey

Kellie

11

Hle Emis

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.

12

Suzanne makes a good case for not segregating. Like Suzanne I do whatever works on top of conventional treatment. I'm afraid the real division is not really alternative vs conventional but a more complex one between users with only skin disorders and those with multiple auto-immune disorders who are looking for ideas about a broad approach to 'wellness'.

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.

13

Firstly Alan, sincere thanks for all the effort you have put into this. I think everyone would want to join me in conveying our warmest appreciation.

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 

14

Hi Emis. I would also like to see a link to a source of information such as a book in which a possible cure is set out mentioned by Marey I think it is important to look at every avenue we can.

15

oh thank you sky!

16

Just thought of another perspective on this so called dichotomy....its chronic v acute !!

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

17

I would also like a link to this book that Marey is talking about added to the list. I also think some kind of symbol to suggest you are alternative, conventional or open to suggestion would also be a great idea then there is no arguments or pressure to fit in with someone elses thinking great idea Marey.

18

I love your suggestions and second them, Kellie!  --Suzanne

Perhaps option buttons for "conventional advice sought," or "open to any suggestions."  While new people may not always know which they are at the outset, at least they'd have the option to click that on whenever they figure it out.  

19

As above in Marey's comment, I like the idea of an option to indicate the type of advice sought, and I would like the LS book being offered as an option to newbies.  --Suzanne

20

what fun kellie ..your imagination shines out!

I was much more dour !!   Had been trying to think of a way to spare newbie's from intruding, in their enthusiasm to engage, upon those who don't want to discuss their meds or speculate over cures....ie an 'anything but group' who like to engage without reference to cures and other upheaval by contrast with the seekers who want to discuss nothing else(!!) .  I was mooting a way of asking the first group how they might possibly wish to indicate their position...rather as one would when suggesting someone might leave their phone off the hook if they don't want to be disturbed ... 

Your idea is much more engaging!