Spread the word
Posted , 10 users are following.
Hello all
I've been following your discussions for ages now, and want to say what a difference it's made to know that I'm not alone even though I've not been posting.
Today a friend came round for lunch and said I looked a bit down. I blurted it all out, told her everything about LS, all the intimate icky bits that I wouldn't normally have shared (I'm a very private person). It felt like such a relief to let go of holding it all in. As far as I know she doesn't have LS herself, but when she left she said she's going to keep a regular check of herself, and tell all her friends to do the same, and pass it on. I don't know any of her friends, but the word will spread.
I don't want to tell too many people, it feels too personal, but I do want to get the word out so others don't have to suffer. I know that this friend isn't a gossiper so there won't be any connection with me later. I wanted to share how empowering it felt to talk about it to (a carefully chosen) someone who wasn't a sufferer, and how that could have a positive outcome for others.
3 likes, 30 replies
Morrell1951 Bridge_of_Sighs
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Great nickname! I think your approach is great. I did the same thing. We all have the power to raise awareness. I'm not expecting that any research will arise from our efforts – even among non-fatal chronic inflammatory disorders LS is low on the list of priorities. What will make a difference to many people is early diagnosis.
With the internet to spread the word among sufferers we can use our individual power to leave little cards in bathrooms and talk to select friends.
I'm glad you're here.
AZM Bridge_of_Sighs
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Chrisy Bridge_of_Sighs
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Bridge_of_Sighs
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I think I'd still choose to remain anonymous if they did do a programme, but if a few more people could e-mail in and say that awareness is needed and that women are so much worse off because of failures of diagnosis, sometimes for many years, then they'd have to take notice.
What about getting it out on the radio in other countries?
I've only had a generic response so far, but it was only yesterday.....
Chrisy Bridge_of_Sighs
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Chrisy
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Guppy007 Bridge_of_Sighs
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suedm Bridge_of_Sighs
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If i have time i will email them too may be more the merrier and we can get the awareness Out There
Bitchin_itchin Bridge_of_Sighs
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Chrisy Bitchin_itchin
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Bitchin_itchin Chrisy
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Morrell1951 Bitchin_itchin
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Chrisy Bridge_of_Sighs
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Morrell1951 Chrisy
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She's a foremost authority and has had an excellent article online for some time (Google Elisabeth Stewart lichen sclerosus and you'll get
I read an article in Harpers recently about algorithms as the standard diagnostic method, so doctors need instruction in the specific algorithms for each condition. From Wikipedia: "Medical algorithms include decision tree approaches to healthcare treatment (e.g., if symptoms A, B, and C are evident, then use treatment X) and also less clear-cut tools aimed at reducing or defining uncertainty."
I've emailed the web designer to ask what happened with this site.
suedm Chrisy
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I have been diagnosed with Lichen Sclersosus and was told it is a rare condition, This is not so, just under diagnosed. Often it is mistaken for Thrush and anti thrush treatment given. unfortunately it is an embarrassing condition for women to discuss even with the nearest and dearest. The younger women are frightened that it is a STD- it isnt; but it DOES affect their sex lives as the tearing for the skin makes normal sexual contact extremely painful and difficulties can arise with their partners, however if untreated it can lead to cancer of the vulva, which could entail a radical excision of the area
It would be wonderful if more women, general practitioners and pharmacists were aware of the condition. Too often no one LOOKS at the vulva and nurses undertaking smears are not familiar with the condition either so again it goes unrecognised.
I have been in contact with a woman who had to have emergency treatment as the whole vulva had been absorbed and the entrance to her urethra sealed, she had been spending hours every day trying to squeeze out the urine through the pin hoe - which finally closed just before Christmas" (I hope you don't mind Hanny that I used your story- but NOT your name or location)
"PLEASE will you raise the subject with the programme producers or makers and make the subject less taboo Gynaecologists are primarily surgeon and Dermatologists dont "take the Knickers off" according to Dr Goldstein in (Washington USA) there are VERY few vulva specialists in the world apparently
Please Help
Thank you"
What do you think?
PS Happy Healthy and Flareup Free New Year to you all
Morrell1951 suedm
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Happy New Year!
Chrisy suedm
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Chrisy
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