All things #lichensclerosus | I create and share evidence-based LS information and provide support | patient representative/patient partner
Toronto, Ontario
Joined January 2023
- Tweets107
- Following116
- Followers39
- Likes255
This is such an important initiative. Please consider donating if you have the means to do so. – at Toronto, Ontario
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…
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…
TLLC - Jaclyn retweeted
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
TLLC - Jaclyn retweeted
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
TLLC - Jaclyn retweeted
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/…
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…
TLLC - Jaclyn retweeted
We only have until Saturday 2nd September so please sign and RT
Fund menopause awareness training for Practice Nurses petition.parliament.uk/petit…
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…
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
TLLC - Jaclyn retweeted
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…
TLLC - Jaclyn retweeted
1045 signatures to get the government to respond to our petition.
Please sign ✍🏻 and Retweet
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…
TLLC - Jaclyn retweeted
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
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 – at Toronto, Ontario
Global Research on the Impact of Dermatological Diseases (GRIDD) Study
#lichensclerosus
my.crf.one/en/Public/Registe…
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. – at Toronto, Ontario
What providers and pts should know abou #lichensclerosus and #pregnancy. @jillkrapfmd @CaseUrology obgyn.onlinelibrary.wiley.co…
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
TLLC - Jaclyn retweeted
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
What a powerful piece of work spearheaded by Dr. Rees. So emotionally bearing witness to the hurt in my #lichensclerosus community. – at Toronto, Ontario
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
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
