About Lichen Sclerosus Support Network

Download our LSSN Overview

When we think about what or who Lichen Sclerosus Support Network is, we have to think about its co-founders and the first set of volunteers, who would go on to become the first board. Not about their individual stories, but their collective struggle. If you're interested in learning more about the individual members of the board, we encourage you to check our Board Page.

Their collective struggle, which was similar to millions before them and would be to millions after them if they didn't come together to solve this problem, was a lack of quality information.

They were lost looking for information, so they came together to bring much-needed awareness and education to the public about Lichen Sclerosus. This serious chronic progressive skin disease affects as many as 1 in 70 vulva owners. While LS is treatable and manageable, too many people are suffering in silence because of a lack of information.

They created Lichen Sclerosus Support Network to do something about that.

About LSSN's Mission

We are a not-for-profit organization whose mission is to empower people with Lichen Sclerosus by providing evidence-based education.

Every person affected by Lichen Sclerosus deserves accurate and thorough information. This allows them to make sound decisions on their health.

We also believe every provider who treats a patient with or possibly with Lichen Sclerosus should be well-informed on diagnosing, treating, and caring for that person.

That is why Lichen Sclerosus Support Network's mission is to provide accurate and evidence-based education to patients and providers.

LSSN Mission banner two people looking down at words written on the sidewalk that read _passion lead us here_

About LSSN's Vision

Our vision is a world where those affected by Lichen Sclerosus are informed, educated, and get diagnosed early.

LSSN Vision Banner - People getting diagnosed earlier - A transgender woman meeting her doctor in the waiting room of doctor's office

LSSN will empower vulva owners to take an active role in their vulvar health. Programs such as the “Check Your Vulva” program will create an appreciation and knowledge of the vulva. These programs will allow people to advocate for themselves better, leading to earlier diagnosis.

On the other hand, the more Lichen Sclerosus specific education we can provide medical providers, the earlier they can diagnose people. Hence, our second program, the provider education program.

By targeting the problem from both sides, we will reduce the current wait time of 5-15 years for an LS diagnosis.

About LSSN's Programs

Check Your Vulva – Coming May 2022

It is unfortunate but true that most vulva owners don't know:

  • They should be checking their vulvas monthly.
  • The name of the different parts of their vulvas.
  • Conditions other than yeast, STIs, and UTIs can happen to their vulvas.
  • What their vulvas look like.

Vulvar health is in trouble because of the lack of sexual health education. It is important vulva owners take ownership of their bodies and start appreciating themselves.

How vulva checks are thought of and done will be revolutionized through the “Check Your Vulva” program. We are taking them from clinical to self-care. From a chore to something you look forward to.

By providing all the necessary tools and guidance to create a relaxing and enjoyable experience, vulva checks will happen more often. As people learn about their bodies, they will notice when they need to go to the doctor sooner. They will be able to explain their condition better. And they will get diagnosed, not just with Lichen Sclerosus but all other sorts of conditions, earlier.

Provider Education Program – Coming 2023

Lichen Sclerosus falls between two medical fields, gynecology and dermatology. Unfortunately, because both lack strong LS education, many patients go mis- or undiagnosed for many years. Patients' conditions worsen and, in rare cases, progress to vulvar cancer due to a lack of a quick diagnosis.

We are determined to change this. Our provider education program will provide education credits to medical providers in multiple fields. They will learn how to diagnose, treat, provide counseling, and aftercare to patients with Lichen Sclerosus.

This education will lead to earlier diagnosis as well as a decrease in vulvar cancer and mental health side effects. Overall providing the community with happier people and families, less time taken off work, and less medical cost.

We Need Your Support

We have ambitious goals, but we won't be able to accomplish anything without your help.

You can help by making a monetary donation, volunteering your time, or providing your services or products in kind.

Will you help us?