Jaclyn Lanthier’s Post

I am so excited to see the open-access ISSVD Lichen Sclerosus textbook published! I am honored to be one of many co-authors, and I am grateful to the editors, Dr. Selk, Mauskar, and Day, for all their hard work in bringing this project to fruition. #issvd #vulvovaginalhealth #genitopelvicpain #gynecology #dermatology #lichensclerosus

Honored to be amongst such insightful speakers at the BSSVD's annual scientific meeting on vulval disorders. So many incredible, thought-provoking talks and discussions were had today; I left humbled and inspired. Special shout-out to the BSSVD admin/organizing team for putting together such a fantastic conference.

Thrilled to be amongst brilliant patient leaders across the globe to hone our #patientadvocacy skills. Grateful to GlobalSkin - International Alliance of Dermatology Patient Organizations and EUPATI for making this happen!

As many of you know, I’m on the board for Lichen Sclerosus Support Network–a 501(c)3 non-profit whose mission is to provide evidence-based education and support to folks with LS. Lichen sclerosus affects approximately 1 in 70 people, and left untreated, can progress to cancer. It has a devastating impact on quality of life, including depression, anxiety, and suicidal ideation. Unfortunately, healthcare providers seldom provide adequate information for patients to manage their condition and get into remission nor do they offer support resources. LSSN helps fill this critical need by providing our community with evidence-based education about treatment, management, and quality of life as well as offering a number of support resources. Help us provide the LS community and caretakers with free education and support programs and services. If you are in a position to do so, please consider donating to LSSN’s fundraiser: https://lnkd.in/gYFZNmNk #givingtuesday2023 #givingtuesday #lichensclerosus

*NEW LICHEN SCLEROSUS STUDY ALERT*⁠ As a part of the Core Outcomes for Research in Lichen Sclerosus (CORALS) team, I'm sharing a survey for our latest study. ⁠ ⁠ The CORALS project is a multi-phased research study working to establish a core set of outcomes to measure in future lichen sclerosus clinical trials in order to have more robust and reliable systematic reviews and meta-analyses. ⁠ The latest phase is looking at symptoms as an outcome measure, and we want to know what symptoms matter most to you/impact you the most.⁠ ⁠ Research is starting to shift and is taking the patient's voice into consideration. This is absolutely critical, as without the patient's voice, researchers may prioritize symptoms that do not impact us.⁠⁠ ⁠ "Dear people with lichen sclerosus and their caregivers,⁠ ⁠ Since you are someone suffering from or caring for a person with lichen sclerosus, your opinion matters to us as we explore the best way to study this condition.⁠ ⁠ The goal of this survey is to determine which symptoms matter most to people with lichen sclerosus.⁠ ⁠ By clicking the link below, you will find a list of symptoms associated with lichen sclerosus. ⁠ https://lnkd.in/gWpskmZ2 ⁠ Please put the list in priority order with #1 representing the most important and #10 the least important to you. For instance, if you thought ITCHING was the most important to you, you would rank ITCH #1. ⁠ ⁠ This survey is anonymous. No identifiable information will be collected. By continuing, you give your consent to participate in this survey.⁠ ⁠ Thank you for your participation. We are grateful for the chance to discover patient symptoms in future research on lichen sclerosus."⁠ Please share with your patient populations. ⁠ The deadline is August 31st.⁠ #lichensclerosus #lichensclerosis #lichensclerosusstudy #clinicaltrial #outcomemeasures #sciencecommunication #survey #lichensclerosusresearch #autoimmunedisease #skindisease #chronicpain #symptoms #symptommanagement