As another year comes to a close, we want to pause, reflect, and, most importantly, say thank you.
To everyone who read our blog posts at 2 a.m. during a flare. To those who shared our resources with a newly diagnosed friend. To those who trusted us with their stories, questions, fears, and hopes. You are the reason LSSN exists.
2025 was a year of growth, learning, and deep listening. It reinforced what we’ve always believed: that living with lichen sclerosus (LS) is about far more than managing symptoms; it’s about navigating diagnosis, identity, relationships, access to care, and long‑term wellbeing.
Below, we reflect on what we accomplished and learned together this year and share what’s ahead for LSSN in 2026.
A Year in Review: What We Focused On in 2025
Throughout 2025, our blog explored the real, day‑to‑day questions people living with LS ask, often long before they find clear answers in a medical office.
Some of our most‑read and most‑shared topics included:
- Managing symptoms and flares — including itch, pain, tearing, and sleep disruption
- Treatment education — what to expect from topical steroids, what’s normal, and when to advocate for change
- Navigating misdiagnosis and delayed diagnosis
- Sexual health, intimacy, and relationships with LS
- Mental and emotional health, including grief, anxiety, and isolation
- Self‑advocacy in medical settings
If you’re newer to LSSN, some foundational reads include:
- When to see a Specialist VS When Your GP Can Help
- A Message of Hope for Those Recently Diagnosed with Vulvar Lichen Sclerosus
- Movement and Joy with Vulvar Lichen Sclerosus
- Sleep, Itch, and Nighttime Flares: Why LS Can Be Worse at Night
👉 You can explore our full blog archive here: https://lssupportnetwork.org/lichen-sclerosus-blog/
“The most powerful thing we did this year wasn’t publishing answers, it was naming experiences people thought they were alone in.”
What We Learned From the Community
Listening closely to our community this year made several things abundantly clear.
People Are Still Being Diagnosed Too Late
Despite growing awareness, many individuals are still being misdiagnosed, often for years, or told their symptoms are “normal,” “hormonal,” or “just anxiety.” This remains one of the most painful and preventable challenges in LS care.
This reinforced our commitment to:
- Patient education that empowers self‑advocacy
- Provider education that centers on early recognition and proper treatment
- Naming medical gaslighting when it occurs
This is one of our biggest motivators behind creating our Provider Continuous Education Program (PCEP) – a continuing education (CME) course for providers around the world. This is a comprehensive continuing-education course designed to provide healthcare providers with the training they urgently need but rarely receive. It teaches clinicians how to diagnose LS properly, how to conduct trauma-informed pelvic exams and biopsies, how to manage long-term treatment plans, and how to support patients dealing with psychosexual distress, fear, shame, or medical trauma. It is the kind of training that prevents misdiagnoses, reduces suffering, improves early cancer detection, and ensures patients no longer fall through the cracks.
This year, we had an ambitious Giving Tuesday/End of Year Giving fundraising goal of $ 24,000 to help fund the creation, accreditation, and delivery of this course, and y’all…we SMASHED that goal out of the water. And we are BEYOND grateful to every one of you for donating, sharing, and helping amplify this fundraiser.
If you still want to donate, you can do so here.
LS Affects Every Part of Life — Not Just Skin
LS shows up in sleep, mental health, intimacy, self‑image, and relationships. Many readers shared that seeing these topics discussed openly helped them feel seen for the first time.
That’s why we continued to publish content that addressed LS holistically, not just clinically.
Community Reduces Shame
When people see their experiences reflected — from fear of steroid use to grief over body changes — shame loosens its grip. Education matters, but connection matters just as much.
“Education is critical, but community is what helps people stay.”
And we hosted some powerful online virtual support meetings this year, often with a medical doctor or student presenting and co-hosting alongside Kathy, our brilliant executive director and patient advocate.
We will not be hosting any more for the year, as we are on break for the holidays. Be sure to sign up and join us in 2026.
Advocacy & Momentum Beyond the Blog
In 2025, LSSN’s work extended beyond written resources. Check out our impact below!
National Advocacy & Policy Engagement
We continued our national advocacy efforts to raise awareness of lichen sclerosus (LS) within healthcare and policy spaces. As part of this work, we traveled to Capitol Hill in Washington, D.C. for “Hill Day,” where we advocated for policy changes related to vulvar lichen sclerosus and access to appropriate medical care. LSSN supported legislation such as the SAVE Act (Safe Access to Value-Driven and Evidence-Based Healthcare), previously known as the Safe Step Act. This legislation aims to address harmful “step therapy” or “fail first” insurance protocols, which require patients to try insurer-preferred medications and prove they are ineffective before accessing the treatment originally prescribed by their doctor. When applied inappropriately, step therapy can delay care, worsen health outcomes, and increase long-term costs. Our advocacy focused on ensuring health plans provide an expedited, medically reasonable step-therapy exception process.
Engagement in Dermatology Research & Professional Conferences
We attended the 2025 American Academy of Dermatology Annual Meeting in Orlando, Florida, where we learned about emerging drugs in development and clinical trials for vulvar lichen sclerosus, lichenoid drug eruptions, cyclist crotch, and related conditions. During the conference, we connected with fellow patient advocates at the Global Skin reception and Coalition for Skin Diseases meetings. We also met in person with members of our medical advisory board and collaborators, including Dr. Akinsemoyin Vaughn, Dr. Erin Foster, and Dr. Melissa Mauskar. Additionally, we made an impromptu visit to meet Dr. Jill Krapf, a long-standing champion of LSSN. This trip was also a meaningful milestone, as it marked the first time Jaclyn and Kathy met in person.
Global Advocacy & Breaking Barriers in Education
LSSN presented at international conferences, including the biannual Global Skin Conference in Prague, Czech Republic. Jaclyn was honored to be the first speaker to present on lichen sclerosus at this conference and to be the first to openly use the word “clitoris” in a dermatology conference setting, helping normalize essential but often overlooked conversations about vulvar anatomy and sexual health.
Advocacy Training & Capacity Building
We participated in advocacy meetings and trainings, including those hosted by the National Organization for Rare Disorders (NORD). These opportunities strengthened our advocacy skill set and deepened our understanding of the importance of patient registries, data collection, and grassroots movements in driving meaningful change.
Patient Education & Community Connection
We hosted educational events and summits that connect patients with expert clinicians and researchers, including our annual Holistic Healing Summit, which was a major success this year. These events continue to serve as critical spaces for learning, validation, and empowerment within the LS community.
And I hope you are ready! We have some impressive Summits and events coming your way in 2026!
Advancing Sexual Health & Quality of Life Conversations
Through our conferences, meetups, and advocacy initiatives, we expanded conversations around sexual health, pleasure, and quality of life; topics that are often marginalized but deeply important to people living with lichen sclerosus.
Strengthening Patient-Centered Leadership
We began laying the groundwork for deeper patient involvement in shaping our programs, advocacy priorities, and future initiatives, reinforcing our commitment to patient-led and patient-informed work.
All of this reinforced a core truth: patients must be partners, not afterthoughts, in healthcare conversations.
Looking Ahead to 2026: What’s Coming Next
As we move into 2026, we’re carrying everything we’ve learned forward.
Here’s what we’re excited to build next:
Launching Our Patient Advisory Board
In 2026, LSSN will formally launch a Patient Advisory Board (PAB) — a group of individuals with lived experience who will help guide our education, research priorities, and advocacy work.
This ensures that patient voices aren’t just heard — they’re embedded in decision‑making.
Interested in learning more? Watch for our upcoming call for applications.
Continued Education — for Patients and Providers
LSSN will continue expanding our work by delivering practical patient education grounded in the best available evidence and real-world lived experience, while also providing provider-facing education to improve diagnosis, treatment, and long-term care for people affected by these conditions.
Expanding the Conversation
While vulvar LS remains our primary focus, we’ll continue thoughtfully expanding resources related to:
- Penile lichen sclerosus
- Lichen planus
- Sexual health and intimacy across genders and life stages
“The future of LS care must be built with patients, not just for them.”
Thank You for Being Part of This Community
If you read, shared, commented, donated, volunteered, or felt less alone because of LSSN this year, thank you.
Every story shared, every question asked, and every conversation started brings us closer to a world where:
- LS is diagnosed earlier
- Treatment is evidence‑based and compassionate
- Patients are believed
- And quality of life is treated as essential care
As we step into a new year, we remain committed to one guiding principle:
Lived experience matters. And together, we are changing what LS care can look like.
With gratitude,
Jaclyn & The Lichen Sclerosus Support Network Team
