HELP PEOPLE WITH LICHEN SCLEROSUS GET DIAGNOSED AND PROPERLY TREATED

Lichen Sclerosus Support Network’s (LSSN) mission is to empower people with Lichen Sclerosus by providing evidence-based education. We envision a world where those affected by Lichen Sclerosus are informed, educated, and get diagnosed early.

What is Lichen Sclerosus?

Lichen sclerosus (LS) is a chronic inflammatory skin condition that can occur anywhere on the body but most commonly occurs in the genital area and around the anus. It is believed to be an autoimmune condition with a genetic component. Symptoms at the vulva and anus range from mild to intense and may include itching, burning, pain, sores, and skin tears. The anatomical architecture and skin can change drastically and often irreversibly, causing significant urinary, sexual, or bowel issues. It is a lifelong condition.

Why does our work matter?
  • It’s more common than we think. Vulvar LS prevalence may be as high as 1 in 60 people.
  • It can affect anyone. LS affects children and adults of all genders and all ages.
  • It is undiagnosed and misdiagnosed too often. On average, symptom onset to LS diagnosis can take 5 to 15 years¹ (or more). Some are not diagnosed until cancer develops. 
  • There is no cure. Currently, there is no cure for LS, but proper treatment can lead to a decrease in symptoms and to remission.
  • It can lead to cancer, which can lead to death. Without proper treatment, LS can worsen and is associated with a 4-7% risk of squamous cell carcinoma (cancer) of the vulva.²

This is where Lichen Sclerosus Support Network comes in. We are actively working to bring together researchers, healthcare providers, patients, families, and the general public so that everyone involved in diagnosing and treating LS has access to evidence-based information about this disease.

Here's a snippet of the work we're doing:
  • We’re partnering with medical, healthcare, and wellness providers and practitioners to better support the physical, mental, and emotional well-being of patients.
  • We’re targeting spaces where teens and adults are hungry for information - Google, YouTube, Instagram, TikTok, podcasts, and blogs.
  • We’re sponsoring yearly events, campaigns, and creators to increase LS awareness and community support.

Join us in making our vision a reality - a world where those affected by Lichen Sclerosus are informed, educated, and get diagnosed early.

WILL YOU HELP US TODAY?
Donate Funds

Fund One Month of Our Web Host Operating Expense – $20
With your donation, you can help keep our website alive. Our website houses lichen sclerosus resources for patients and providers as well as updates on events, FAQs, and a provider directory.

Fund One Month of Transcription/Search Video Service – $50
With your donation, you can support a patient in accessing accurate and timely information on how to treat and manage their LS. We subscribe to a software that transcribes, captions, and provides search capabilities for expert interview recordings, allowing viewers to find valuable and specific information in seconds. 

Fund a Prototype Sample Box – $100
With your donation, you can help fund a new initiative that will promote vulvar health for all. We’re designing vulva self-exam kits which include everything needed for a relaxing monthly vulva check experience, and we need to acquire samples of the items that will be provided in these boxes.

Fund One LS Patient to Attend a Week-long Virtual Lichen Sclerosus Summit – $250
With your donation, you can support a patient in attending this summit who may otherwise be unable to because of a financial barrier. In May 2021, we held our inaugural event – the Lichen Sclerosus Holistic Healing Summit. In May 2022, we’re excited to hold this event once again but on an even bigger scale, with twice the amount of invited speakers, a virtual meeting platform with all the perks for enhancing engagement, and vendor sponsors. Topics include science-based information on lichen sclerosus, pelvic floor physical therapy, mind-body connection practices, and more.

Donate another amount. All gifts make an impact.

Donate Time

We are looking to acquire new volunteers who can help with marketing, fundraising, administrative support, or serving on our nonprofit board. Everyone is welcome. You don’t have to have lichen sclerosus to volunteer. Apply here.

Spread the Word
  • Share this GivingTuesday opportunity with your networks.
  • Follow @lichensclerosussupportnetwork on Instagram.
  • Embrace the power of word of mouth. Check your vulva, then remind others to do the same. Check out @lichensclerosussupportnetwork to see how.
  • Check out LSSN’s website for more resources.

 

References

¹ Instagram Dr. Jill Krapf, MD MEd FACOG NCMP 

² YouTube The Centers for Vulvovaginal Disorders Lichen Sclerosus Webinar 

 

*This nonprofit fiscal sponsorship between Lichen Sclerosus Support Network and YWCA Metropolitan Chicago provides the opportunity for historically underserved groups in healthcare to access evidence-based information and emotional support, aligning with YWCA’s mission to eliminate racism, empower women and promote peace, justice, freedom and dignity for all.