All things #lichensclerosus | I create and share evidence-based LS information and provide support | patient representative/patient partner
Joined January 2023
- Tweets 107
- Following 116
- Followers 39
- Likes 255
24 Photos and videos
28 Nov 2023
This is such an important initiative. Please consider donating if you have the means to do so.
27 Nov 2023
On #GivingTuesday2023 please support Vulvar Education and Research--I try so hard to promote learning and research and we could do so much more if people support the work! engage.utoronto.ca/site/SPag…
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27 Nov 2023
Help me raise funds for Lichen Sclerosus Support Network so they can continue to provide free #lichensclerosus education and support. givebutter.com/LSSN_gt23/jac…
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TLLC - Jaclyn retweeted
29 Oct 2023
To mark #WorldPsoriasisDay today, we've launched a new set of information videos for people living with or caring for someone with #psorias or #psoriaticarthritis. Check out the talk and panel discussion videos here: bit.ly/3s3TsHU
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TLLC - Jaclyn retweeted
29 Sep 2023
Gynaecological Cancer Awareness Month
4 women would have been told today they have #vulvalcancer and it would have been a double shock as it would of been the first time they had heard of this cancer.
Don’t let it be it’s rare so don’t care.
Help us raise awareness
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TLLC - Jaclyn retweeted
14 Sep 2023
September is Gynaecological Cancer Awareness Month 💜
Did you also know that there are actually 8 gynaecological cancers?
Click the like to read about them all.
instagram.com/p/CxLVrSaoXK7/…
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6 Sep 2023
Join LSSN's Mini-Summit 2023 on vulvovaginal conditions. Expert speakers will be touching on #hidradenitissuppurativa #gsm #centralsensitization #lichensclerosus #lichensimplexchronicus and more. 100% virtual event, Sep 29-Oct 1 - Tickets at eventtitans.com/e/minisummit…
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TLLC - Jaclyn retweeted
30 Aug 2023
We only have until Saturday 2nd September so please sign and RT
Fund menopause awareness training for Practice Nurses petition.parliament.uk/petit…
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3 Aug 2023
New LS survey from the CORALS team looking to get the patient's voices on what symptoms impact them the most.
Please put the list in priority order with #1 representing the most important and #10 the least important to you.
ohsu.ca1.qualtrics.com/jfe/f…
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3 Aug 2023
Huge congrats to Tina, @caitsith675 Clare and Emma @VulvalCancerUK for getting this petition in the UK to 10, 000 signatures. Thanks for being amazing advocates and thanks to everyone who reposted and shared to their networks along the way.
#lichensclerosus
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TLLC - Jaclyn retweeted
1 Aug 2023
Lichen Sclerosus is
Under-reported and under-recognised.
Many get misdiagnosed as thrush and even when diagnosed they given the wrong information or no information.
This petition will help change that
🔗petition.parliament.uk/petit…
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TLLC - Jaclyn retweeted
29 Jul 2023
1045 signatures to get the government to respond to our petition.
Please sign ✍🏻 and Retweet
24 Jul 2023
What it’s like having #LichenSclerosus
➡️Increased risk of vulval, penile or anal cancer.
➡️It’s Under-reported and under-recognised
➡️Please help us get to 10,000 signatures so the government will respond.
➡️We only have until 9th August
🔗➡️petition.parliament.uk/petit…
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This brochure will show you how to perform a vulvar self-exam for abnormalities. However, this is not a substitute for an examination by a health care professional, so if you are concerned, consult your health care provider.
brochure available at: bit.ly/vulvarselfexamination
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18 Jul 2023
This is such an important survey for folks with dermatological conditions, including LS. If you haven't yet, be sure to fill it out. It's available in 17 different languages. #Griddstudy #lichensclerosus
18 Jul 2023
Global Research on the Impact of Dermatological Diseases (GRIDD) Study
#lichensclerosus
my.crf.one/en/Public/Registe…
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10 Jul 2023
The literature on #lichensclerosus and pregnancy is rather scare, so I'm thrilled to see more research into this important topic. Can't wait to read the article.
10 Jul 2023
What providers and pts should know abou #lichensclerosus and #pregnancy. @jillkrapfmd @CaseUrology obgyn.onlinelibrary.wiley.co…
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26 Jun 2023
Did you know that pain or difficulty inserting tampons is often a symptom of vulvodynia and/or vaginismus? The Tampon Campaign, spearheaded by the BC Centre for Vulvar Health, is trying to get this information on tampon packaging. @ubykotex @Tampax
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ISSVD launches the Vulvar Ulcer Algorithm, a comprehensive and interactive document with valuable information designed with the user in mind.
We encourage you to take advantage of this document and share this tool with other healthcare professionals.
Visit:onx.la/7f4a6
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19 Jun 2023
What a powerful piece of work spearheaded by Dr. Rees. So emotionally bearing witness to the hurt in my #lichensclerosus community.
19 Jun 2023
The full film is here! tinyurl.com/LS-film
This short film was created based on the real words of people with vulval lichen sclerosus (LS), interviewed as part of the 'Living with vulval LS' study at the Universities of Bristol and Warwick
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13 Jun 2023
Our lichen sclerosus patient community is encouraged to take part in the GRIDD Study. GlobalSkin is collecting patient impact data through a 10–20-minute survey. Take part today globalskin.org/GRIDDStudy #GRIDDStudy
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