LS Perhaps we could compile a Fact Sheet

Women's health
1

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!)

2

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!

3

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

4

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.

5

brilliant sue DM,

i will support the project in any way i can.

thanks for your enterprise.

love best wishes and keep on dancing...

marey x

6

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

 

7

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.

8

I need a few days to think this through, Suedm. 

Wonderful that the project is already picking up momentum. 

9

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

10

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

11

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. 

12

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!

13

misunderstanding...

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

14

news on your car?

15

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

16

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

17

sue and morrell

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

18

NOW THAT is a Good Idea!

 

19

sorry ...whats the good idea sue ?

20

As an experiment I compiled my own fact sheet and tried pasting it into the 'About' section of my profile here. It has quite a short limit of lines, so that's not going to work. It wouldn't display a quarter of this.

Age: 62

Gender: Female

Age at onset of LS: birth

Age at diagnosis of LS: 62

Primary health care professional treating LS: Gynecologist

Treatment(s) prescribed: Clobetasol cream, Premarin cream (intra-vaginal)

Treatment(s) used: Clobetasol

Treatment(s) applications: 2x per week

Extent of LS involvement: anal area, vulva

Extent of white patch(es): perineum

Chronic tearing: perineum

Age when sex first caused tearing: 22

Children: 2

Ages of childbirths: 30, 34

Atrophy of labia minor: yes

Atrophy of labia major: no

Narrowing of vaginal introitis: yes

Fusing of clitoral hood, age(s): 38, 51, 61

Sex is impossible without pain and/or tearing: yes

Periods of remission when sex was comfortable: 32-48, 57-60

Yeast infections: chronic when sexually active

Main known food triggers: sugar, chocolate

Other known triggers: sex, sweat, tight pants