research Archives

Lichen Sclerosus Research Is Changing: New Treatments & What I Learned at ISSVD 2026

Aug

Lichen Sclerosus Research Is Changing: New Treatments & What I Learned at ISSVD 2026

Introduction If you’re not familiar with ISSVD, it’s the International Society for the Study of Vulvovaginal Disease, and this Congress brings together some of the clinicians and researchers working at the forefront of vulvar and vaginal health. And there was so much presented at ISSVD 2026 that I wanted to bring some of it back to you—but without making you sit through hours of scientific presentations or decipher research jargon. So in this video, I’m breaking down some of the research and conversations that stood out to me most as a patient advocate, in normal-person language, and focusing on what I think actually matters to patients. Some Important Notes Before We Dive In And yes, before we get started: this is a long one! If you've followed my work for any length of time, you probably know how passionate I am about vulvar-health research. After spending several days surrounded by…

What I Learned at the 2026 ISSVD World Congress

Aug

By Jaclyn Lanthier

Blogs, Jaclyn Blog

What I Learned at the 2026 ISSVD World Congress

Introduction Hello, hello, happy August! I cannot believe how quickly this year has flown by. Last month, I (Jaclyn) had the privilege and honor of attending the 2026 International Society for the Study of Vulvovaginal Disease (ISSVD) World Congress in Halifax, Canada. For those unfamiliar with the International Society for the Study of Vulvovaginal Disease (ISSVD), it is an international, multidisciplinary organization dedicated to advancing knowledge about vulvar and vaginal diseases. The ISSVD brings together healthcare professionals and researchers from many disciplines. Its goal is to improve our understanding, diagnosis, and treatment of vulvovaginal conditions. One of the things that makes the ISSVD particularly special is this multidisciplinary approach. Vulvovaginal health does not neatly belong to one medical specialty, and the World Congress reflects that. The meeting brings together clinicians, researchers, pathologists, gynecologists, dermatologists, pelvic-health professionals, sexual-health experts, and others working in vulvovaginal disease. For a patient advocate like me,…

Vulvar Lichen Sclerosus, Autoimmune Conditions, & Comorbidities

Mar

By Jaclyn Lanthier

Blogs, Jaclyn Blog

Vulvar Lichen Sclerosus, Autoimmune Conditions, & Comorbidities

Introduction When you receive a diagnosis of vulvar lichen sclerosus (VLS), the first wave of emotion is often relief. You finally have a name for what you have been experiencing. But very quickly, a second wave can follow. You start reading and see the words 'autoimmune' and 'cancer risk'. And then you see long lists of “associated conditions.” Panic sets in; as does fear, worry, anger, and more. It can feel like the diagnosis is growing beyond the vulva, and it can be downright terrifying (especially if you have health anxiety, as I (Jaclyn) do). Let’s slow this down. This post is about clarity. It’s about context. And most importantly, it’s about empowerment, not fear. We’re grounding this in peer-reviewed research, including the 2020 review by Krapf et al., De Luca et al. (2023), Tasker et al. (2020), etc., and translating it into something that actually helps you in a…

Free Masterclass on Vulvar LS with Dr. Jill Krapf

Jan

By Jaclyn Lanthier

Jaclyn Blog

Free Masterclass on Vulvar LS with Dr. Jill Krapf

Introduction Happy New Year to all of our beautiful LS warriors! We wish you a year filled with answers, healing, and empowerment. January 17 is almost here, and you know what that means: Vulvar Lichen Sclerosus Awareness Day. This global day highlights the condition and works to break the stigma around it. To mark the occasion, we’re starting 2026 with something deeply needed: open, evidence-based, and empowering education about vulvar lichen sclerosus (VLS). We’re hosting a free live screening of a Masterclass on Vulvar Lichen Sclerosus, led by Dr. Jill Krapf, one of the field’s leading experts, followed by a live Q&A. Register here. This event is free because everyone deserves access to high-quality medical education. VLS already creates enough barriers, and cost should not be one of them. Register or donate here. Replays are only available to registered users! Why a Masterclass with Dr. Jill Krapf? Dr. Krapf is…

Jun

By Kathy

Blogs, Kathy Blog

Lichen Sclerosus Advocacy in D.C.!

Our Unforgettable Advocacy Trip to Capitol Hill! Hey, incredible LS Warriors! Get ready to cheer because something HUGE just happened for our community! This past week, I had the honor of representing YOU and the Lichen Sclerosus Support Network (LSSN) on a powerful advocacy trip to Washington D.C. – affectionately known as "Hill Day"! It was an intense, emotional, and absolutely rewarding experience, and I can't wait to share all the exciting details! For too long, living with lichen sclerosus has meant facing a confusing and often isolating journey. We know the struggle of delayed diagnoses, limited treatment options, and feeling like your concerns aren't fully understood. That’s why LSSN exists – to turn that isolation into empowerment and fight for a brighter future for every single one of us! This trip wasn't just about LSSN; it was a massive collective effort! Our incredible team for this inaugural lichen sclerosus…

Nov

By Jaclyn Lanthier

Jaclyn Video

Vulvar Lichen Sclerosus: What’s New?

Introduction Today's video is the last I (Jaclyn) will be doing for 2024. I debated a lot on what the topic should be to wrap up 2024, and then I came across a paper by Nguyen and Kraus (2024) called Vulvar Lichen Sclerosus: What's New? This paper reviews all the updates from this past year on the topic of VLS, and so I thought what better what to wrap up the year than by highlighting the main findings from this paper. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate.” *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. https://youtu.be/GqdKOn1jUB0 Timestamps on Vulvar Lichen Sclerosus: What's New? 0:00 – Introduction 2:08 - Core Outcome Measures 6:24 - Increased…