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Lichen Sclerosus group suggestions etc

Posted , 6 users are following.

Emis_Moderator
Emis_Moderator

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 likes, 36 replies

36 Replies

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  • Lainimac
    Lainimac Emis_Moderator

    Posted

    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.  

  • marey
    marey Emis_Moderator

    Posted

    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?

     

  • suedm
    suedm Emis_Moderator

    Posted

    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

  • suzanne00
    suzanne00 Emis_Moderator

    Posted

    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

        

    • sky23
      sky23 suzanne00

      Posted

      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
    • kellie42169
      kellie42169 suzanne00

      Posted

      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

    • Morrell1951
      Morrell1951 kellie42169

      Posted

      Alan, this is an example of why segregation may have to be the solution. If I were recently diagnosed with LS and had questions and needed support, this sentence would feel like an attack:

      "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."

      This sentence misconstrues Dr. Goldstein's presentation. He admits that research has not yet brought us drugs that single out the three proteins that cause the inflammation of LS, so we use Clobetasol, which acts on the entire group. It does, however reduce the inflammation and stops the progress of the disease in many women. He also puts our minds at rest re: thinning of skin as a side effect.

      We all do what we can to address the triggers we feel affect our individual cases. But it is not appropriate to say to a new patient "not clob".

      This, I believe, gets to the nub of the conflict here. I'm not here to have fun or make friends. There are women here who can't urinate properly, who are afraid their marriages will end, who worry they might not be able to have children. LS progresses quickly and fear-mongering about clobetasol is dangerous.

    • marey
      marey Morrell1951

      Posted

      ....and clobetasol has not been able to help them. Clearly alternatives are needed. Otherwise the disease just marches on.
    • Morrell1951
      Morrell1951 marey

      Posted

      I for one have had my disease halted by clobetasol in the past year. There are levels of LS where the scarring does continue, but who knows how much worse it might have been without medication? And I also know that remissions happen – I've had a few and each one lasted years. They might appear to be 'cures' caused by whatever diet one is on, until the flares start again.

      Supplementary approaches are very much worth discussing and experimenting with.

    • marey
      marey Morrell1951

      Posted

      Thank you Morrell. This is really helpful sharing. It helps to exchange our perspectives....whilst respecting individual choices.

       I think the purpose of this little window that Alan is offering  here is to allow us to have this dialogue with a view to reaching an understanding. So if I may I'll forge on. 

      You will appreciate that I feel I have found a resource which I'm eager to share...just as you are enthusiastic about sharing Goldstein.

      I respect your choice....and also in discussion with someone who is very uncertain about what to do....I would make it clear that seeking treatment is the responsible route. Following through with that the only recognised 'treatment regime' at the moment is the application of Clobetasol. With a heavy heart I feel I cannot allow someone to take 'a risk' and to go untreated so I put forward the two perspectives as best I can,  suggest they listen to Goldstein, and decide for themselves what to do based upon a complete absence of an alternative 'treatment regime' at the moment.

      Of course that is changing and a new prospective regime is about to be published which offers an alternative whole programme.

      It may be that Alan will over-rule us one way or the other but if inclusion of this resource was dependent upon agreement between us would you be prepared to give your consent or to not object to its inclusion among the resources we are choosing for our site?

    • kellie42169
      kellie42169 Morrell1951

      Posted

      My comment as harsh as it sounded was the truth, and I don't for one minute say that clob doesn't help 'but' it only helps some. I also didn't tell anyone EVER to not use it, how anyone treats themselves is none of my business nor have I ever told anyone to treat themselves 'alternative'.

      I am 38 years old and have probably had LS for three years with no treatment and I'm still waiting for my appointment with the specialist which is next month, I do not want to be using clob for the next 40-50 years.

      You only have to do some research on google to find plenty of people that have reversed autoimmune disease with diet etc. There is so much literature out there if you are prepared to look, as I'm not allowed to link anyone can inbox me for the links.

       Its seems to me Morrell that you are only happy when people come round to 'your' way of thinking this is something I have noticed alot and with your experience and intellect everyone takes your word as gospel you are very pushy!! And as some have commented to me it's like this is 'your' forum.

      You are the first to speil off Dr Goldsteins lecture word for word. he isn't God nor does he know everything as he has stated. We can only do our own research to help ourselves.

      There has never been any real conflict and I have only ever seen you and another lady no names mentioned attack when somebody says something to which you do not agree usually Marey. Some are here to make friends and have fun some not, I have never fear-mongered about clobetasol I have even said in one post that next month I may even use it myself until 'I' find an alternative way to treat myself. 

      I already feel I've said too much, but didn't appreciate the personal attack but it was obviously MY turn !! 

      Alan, please do not split the group I do not think this will be in everyones best interests especially the newcomers, If Morrell doesn't wish to participate in any 'Alternative' discussions she could just keep scrolling but there is plenty of information for those that don't know or haven't researched which we have done for them. We do not suggest only our way.

      The only person who would be happy if this was split would be Morrell, please do not let the voice of one speak for everybody else especially those who aren't brave enough to speak up for themselves. 

       

    • sky23
      sky23 kellie42169

      Posted

      In my opinion..'slapping on the clob' is something I personally can identify with..it has the air of of tedious, hopeless and repetitive action.. for many of use who use this medication and understand its limitations it is most apt. so what has happened to the word 'hope'..and optimism..striving..learning.and exchanging open honest views without fear of penalty and victimisation..is a public flogging to be next?
    • Emis_Moderator
      Emis_Moderator suzanne00

      Posted

      Hi Suzanne,

      You have summed it all up very well thanks.

      Re:

      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.  

      See http://patient.uservoice.com/knowledgebase/articles/398306-email-notifications-and-unsubscribing-of-emails

      We do send a weekly summary email out but if users are getting too many emails and it is a problem then they can just switch off all emails and use the notification page to scan through alerts. The notification page is basically a list of all the emails you receive.

      https://patient.info/forums/me/notifications

      Alan 

    • Emis_Moderator
      Emis_Moderator kellie42169

      Posted

      Hi Kellie,

      Terms such as "pharma" and "big pharma" are the sort of terms that annoy other users throughout the forums and causes no end of disagreements.

      Also, saying "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." is another way to guarantee arguments as proved below.

      This is exactly the sort of language I am trying to stop users using as well as counterpointing which just turns discussions into arguments which is counterproductive for all. In an open forum please think of the language and terms used. It is your opinion LS is autoimmune etc. I am NOT disagreeing with your opinion but it is an opinion and using language as you did will just inflame discussions.

      Alan

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