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LS Perhaps we could compile a Fact Sheet

Posted , 9 users are following.

suedm
suedm

I was discussing this forum with my 40+ son yesterday He suggested that if we could compile a fact sheet of what we KNOW not  what we THINK; offer it to our gynae / derm consultants for their input then have a website with an international bias, we could perhaps construct a questionaire together with the medics relating to common issues: treatments / associated conditions/ lifestyle issues/ stress factors / age / ethinicity/ diet and the usual smoking drinking and sexual issues/ family history

A separate part of the paper could be for suggestions / alternative therapies / what works for me /

When this time limited self referral "study" was complete PhD students could be offered aspects to study for their final degrees

Thoughts from you all??

(Interestingly my son has recently diagnosed Gilberts syndrome - another auto immune condition his father has MS and he brother asthma!)

8 likes, 108 replies

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  • Vibrant_Health
    Vibrant_Health suedm

    Posted

    Great idea,Suedm.  It takes a clear minded person like your son who cares and who is not directly driven to confusion with this condition.  If a grid or chart of some kind can be posted so that each person's experiment(s), what worked, what did not, under what diet, lifestyle etc, surely a more reliable and useful information can be achieved.  Thanks so much and look forward to making this project work!
  • suedm
    suedm

    Posted

    Dear V H I need help to work out just how we manage to achieve this. One thought i had was that my other son could organise a website - but this week  his girl friend has just been diagnosed with 4th stage breast cancer and he is otherwise occupied, so I can't ask him just now. However I may "play" off line and think how to design a questionaire /fact sheet - unless there is anyone out there who has the skills knowlendge/ time Please help
  • Morrell1951
    Morrell1951 suedm

    Posted

    There's a free program called Survey Monkey, but someone statically oriented would still need to draft the cquestions and have the answers feed into categories. Certainly not my expertise. It would be excellent to have that spreadsheet from this forum, though.
    • suedm
      suedm Morrell1951

      Posted

      Thank you for that information Morrell, I will check it out sometime- in the mean time what facts  do we have between us?What sort of information should be included in a fact sheet?

      From that would come the questionaire perhaps?

      An example headings

      Terminology explanation

      Age of onset

      Location and spread of symptoms

      Duration of symptoms /treatments

      non contagious

      Types of symptoms : burning/ fragile, friable skin/ tearing /white plaques /itching /confusion with thrush

      demonstrate difference between LS and Lichen Planus

      probably auto immune

      could also be associated with other conditions like low thyroid function

      rationale for treatment options

      possibly can go into remisson / become quiescent

      It would be helpful to  add subtract anything you think would be helpful

      Ibelieve that a FACT sheet should be that not overspill into other areas - however there could be information about alternative  treatment options available

      local associations support groups locally and internationally

       

    • Morrell1951
      Morrell1951 suedm

      Posted

      Good start, Sue. There are two directions to go here:

      1. a fact sheet about the condition (which is very available everywhere – the write-up on the LS for doctors right here is great). So if you're thinking handout it could pretty much be picked up from there.

      2. a survey about what our different experiences are, sort of raw data to hand off to experts. Each question would need multiple choices, so for location/spread of symptoms you would need something like:

      • vulva

      • anal

      • inner thighs

      • buttocks

      • under breasts

      • head

      • large percentage of body

      I don't really know if this would have value, but as far as I know th last scientific study of LS was 1960.

    • suedm
      suedm Morrell1951

      Posted

      Thank you Morrell, I will try and get something together from you suggestions, however i am away a lot, and my life is pretty full - so i will possibly be a tad slow - when winter comes I will have more time...well may be!!

      I thought a fact sheet from an individual's perspective could be a Good Thing...must fly they are coming to asses the car shortly

    • Morrell1951
      Morrell1951 suedm

      Posted

      We could fill out the fact sheet on our profile page here.
    • marey
      marey Morrell1951

      Posted

      eeek going public ish.

      but yes I would be prepared to fill out the fact sheet on my profile page and would consent to this info being used for statistical purposes by researchers. 

    • suedm
      suedm marey

      Posted

      Goodness no- i dont think we need to have personal details  Marey the information would be anonymous. This is why thought needs to go into the design and collection of the material and it cant be done overnight. Hence my suggesting winter would be a GOOD TIME to sit down and compile something as summer is so busy for me- Worry not, but thank you anyway for your help!
    • marey
      marey suedm

      Posted

      misunderstanding...

      we still anonymous on our profile pages...i hope!!

    • suedm
      suedm marey

      Posted

      The assessor hase been and i will need a new roof and the dents in the bonnet and tail gate banged out. As i live in a fairly remote area i need a car while work is done so i will have to wait until a car is available - next week perhaps!

      I don't post personal details when registering with online sites and and am very cautious with personal details given or asked over the phone- or indeed if i think the information is just going to sit on file somewhere- My techie son is adament that one has to protect identities at all costs! I am not that bad but don't want the hassle of stolen identity or anything else

    • Morrell1951
      Morrell1951 suedm

      Posted

      Sorry to ring your alarm bells. Our profiles are no less anonymous than anything we say here.
    • marey
      marey Morrell1951

      Posted

      sue and morrell

      i'm protective of my personal info....but comfortable about giving details for statistical purposes and like the pseudonym arrangements here. 

    • marey
      marey suedm

      Posted

      sorry ...whats the good idea sue ?
    • marey
      marey suedm

      Posted

      some delay ...but sounds like repairs to your car are in hand.

      agreed re: anonimity....the good idea you're applauding of morrell's was her earlier suggestion of attaching stats to our profiles?  But as that doesn't seem to have worked perhaps a dedicated question would do it?

    • Morrell1951
      Morrell1951 marey

      Posted

      Yes, we could just paste mine into a comment on the dedicated thread and it would turn into an excellent archive that some astute stats analyst could play with.

      How about some edits to my list before we begin? Any thoughts anyone? Oh, I see Sue said stressors. Absolutely essential!

    • marey
      marey Morrell1951

      Posted

      treament recommended

      treatment followed

      treatment proposed

      i would have different answers to all three...as haven't yet started my protocol....awaiting arrival!

      Most importantly it would give those who have cured an opportunity to outline their methodology. not all have been alternatives...we had a recent case using steroids...am sure she would share if still around.

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