Our website uses cookies to improve and personalize your experience. We do not sell your information. Our website may also include cookies from third parties like Microsoft Clarity, Google Analytics, Google Adsense. By using the website, you consent to the use of cookies. We have updated our Privacy Policy. Please click on the button to check our Privacy Policy.

Ok, I Agree Privacy Policy

You Don’t Have to Figure This Out Alone

A diagnosis of lichen sclerosus often brings a mix of relief and fear. Relief because you finally have an answer, but fear because the future feels uncertain. We’ve been exactly where you are.

At LSSN’s International Virtual Meetups, we trade “fighting it alone” for “navigating it together.” This is a safe, caring space to share your questions, find practical solutions, and connect with a community that truly understands the lived experience of LS. Whether you were diagnosed yesterday or ten years ago, there is a seat for you here.

From Confusion to Confidence

We talk openly about the things others shy away from: the anxiety, the physical discomfort, and the complexity of daily life with LS. But we don’t stop at the challenges. We share what is working, what we’ve learned from experts, and how we are reclaiming our quality of life.

You’ll leave these sessions feeling less isolated, more informed, and ready to take your next steps with confidence.

What to Expect

  • Join the List: Sign up to receive email notifications with upcoming dates, times, and secure entry links.
  • Step Inside: Our meetups are held on a secure platform. To protect your privacy, sessions are never recorded, and a passcode is always required.
  • Share Your Voice: We start with introductions and a basic overview of lichen sclerosus, followed by an opportunity to ask questions or share your story.
  • Community Wisdom: Everyone is welcome to share their experiences and offer insights. We learn from each other in a respectful, moderated environment.

Testimonial from an LS Sister

I participated in my first virtual meet up in November. I was anxious but excited. I had no idea what to expect but felt great relief and such a lightness after the meeting. I finally felt heard; I finally felt seen. I had been diagnosed for about two years at this point, and up until then, I went through it all alone. The physical pain, the awful symptoms, the grieving of lost anatomy, the frustration, and fear for my future. I had never heard about LS prior to my diagnosis and never knew anyone with it after until the meetup. While I’m saddened that anyone has to live with this awful disease, I’m deeply grateful for the connections I have made and the community I am now apart of. I feel a sense of belonging and support that I couldn’t have dreamed about prior to the virtual meetup. Forever grateful for you, Kathy.

Jaclyn

Toronto, Canada

Stop Searching. Start Connecting.

Your community is waiting to meet you. Join a conversation where you don’t have to explain your symptoms because we already understand them.

In this circle, everyone belongs. We use inclusive, gender-neutral language to honor the diverse experiences of everyone living with LS. Thank you for helping us make sure every person feels supported and at home.

Join our team of volunteers and get involved in spreading LS education.

Disclaimers

Important Information:

The LSSN team is patient advocates, not medical providers or mental health professionals. We provide peer support and education, but we cannot give medical advice or replace the care of your doctor or therapist.

If You Are in Crisis

LSSN does not provide emergency or crisis support. If you are in immediate danger or feel you cannot keep yourself safe, please call your local emergency services or go to the nearest emergency room immediately. Crisis Lines