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What is Lichen Sclerosus?

Lichen Sclerosus is an inflammatory chronic skin condition that mostly affects the anogenital skin. It creates localized inflammation, which changes the texture of the skin. The skin can turn white and appear waxy. The most common symptoms are itching, tears, architectural changes, and pain with sex (dyspareunia). Although there is no current cure for Lichen Sclerosus, it can be managed with proper treatment and care.

Learn more about Lichen Sclerosus

Who is Lichen Sclerosus Support Network?

Your donations make it possible for us to fund our organization and programs so we can change the future of people with Lichen Sclerosus worldwide.

LSSN Nonprofit

We are a not-for-profit organization whose mission is to empower people with Lichen Sclerosus by providing evidence-based education and support. Our vision is a world where those affected by Lichen Sclerosus are informed, educated, and get diagnosed early.

Learn more about our cause

LS Warriors

Are you looking for a positive supportive community to help you deal with the mental, emotional, and physical effects of LS? Then you need to join LSSN's private membership the LS Warriors. A family of warriors learning, fighting, and healing together in a positive private intimate space built for you.

Learn more about the LS Warriors

LS Support Virtual Meetup

Do you feel alone? How about worried, anxious, unsure? How would you like a safe place to see how others overcome these struggles? Now’s your chance to do that! Join our next biweekly virtual meetup. Ask your questions, share your concerns and get peace of mind.

Learn more about our virtual meetups

LS Education

Not sure where to get answers to your LS questions? No worries, we got you covered in our extensive video and blog collection. From well researched solo videos to interviews with relevant experts. Check out our library.

Learn more about our content

What's Happening at LSSN?

Breaking Through Misconceptions, Paving the Way for Hope

LSSN is quickly becoming the #1 hub for LS patient information. We are changing the future of people with lichen sclerosus by providing easy-to-understand content and bringing outstanding experts to educate patients.

Proving educational content on the internet has already touched more than 118,000 people with LS in 2023. We want to change the future of 200,000 more next year!

For GivingTuesday this year, we're raising funds to create more easy-to-understand, evidence-based content and education in 2024. By investing in our Education Fund, you can finance a life-changing piece of content.

Will you help change someone's future with lichen sclerosus by donating today?

Donate Now

LSSN Is A 2023 Top-Rated Nonprofit!

You made it possible!

Thank you to everyone who has shared and continues to share their reviews on GreatNonprofits.org website. By sharing your stories and experiences, LSSN has become one of the first 2023 Top-Rated Nonprofits of the year.

This honor makes it possible for more donors and potential volunteers to find our organization and help further our mission.

If LSSN has touched your life please consider sharing your review so even more people can find us.

Click to share your review

Take Part in the GRIDD Study

Our lichen sclerosus patient community is encouraged to take part in the GRIDD Study. GlobalSkin is collecting patient impact data through a 10–20-minute survey (available in 17 languages).

It will help to validate the very real and difficult challenges faced by dermatology patients globally. Data collected will support local, national, and international advocacy work for more research, better treatments, and healthcare policies and, ultimately, will improve the lives of dermatology patients.

Deadline is December 31, 2023.

Get more information

LS Digital Zine

The LS Zine Project is our newest initiative. We have collected your stories, poems, artwork, and interviews about living with LS. And released them to raise awareness and let people know they are not alone.

LS has gain visibility over the last few years. As we grow as a community it's important everyone's voices are heard.

Download your FREE copy today and share it with a someone to help bring more awareness to this condition.

Download your copy of the LS Zine

The LSSN Membership is OPEN!

We are pleased to announce the new Lichen Sclerosus Support Network membership!

In partnership with LS Warrior LLC, we will provide our recurring monthly and annual donors various programs to help them overcome the mental and physical effects of Lichen Sclerosus.

Click to learn more about the program

We need your Help

It takes a team of dedicated volunteers to help with research, copywriting, web design, event planning, etc., to bring quality lichen sclerosus education to our LS community.

We can use your help. That's why we're calling for all volunteers.

Click to view our volunteer job board

How to Donate

Sponsor an Event

Help our organization provide quality content
Advertise your company with us
Support Lichen Sclerosus education and awareness

Tax Deductible Donation

Make one-time general donation
Gain access to our membership with recurring donations
Get US tax deductible receipt

Donate Now

Donate Time or Services

Volunteer your time to advance the mission
Donate your service or product
Make a one-time donation or become a continuous sponsor

Lichen Sclerosus is more common than we think and it's often missed and this is really important.
Jill Krapf, MD

Get the Facts

Find answers to our most frequently asked questions.

Go To FAQ

Get Support

Join our virtual support.

Go to Meetup

Get A Provider

Search our referral based provider directory.

Go to Directory

Lichen Sclerosus Blogs and Videos

New blog post every Tuesday and video every Friday

Graphic image design of the silhouettes of 4 people standing back to back, representing the strength and resilience behind the LS community. The title text above reads LSSN 2023 Year in Review.

November 20, 2023

LSSN End-of-Year Wrap-Up and Hope for the Future

What has LSSN been up to in 2023? Click to read our year in review, new research, and what's to come for 2024.

Image of Jaclyn with red lipstick, a bright mustard yellow shirt, long brown hair and cat-eye liner pointing at the title text which reads: "Non-ablative laser for lichen sclerosus: Is it better than ablative laser"?

November 16, 2023

Non-Ablative Laser for Lichen Sclerosus

Ablative lasers can help with symptoms, but aren't a treatment for LS. Is non-ablative laser for lichen sclerosus better? Click to find out!

Image of an Asian person, in a soft pink long dress, with a pregnant belly pointing at text that reads "Lisa's lichen scleorsus pregnancy journey".

November 6, 2023

Lisa’s Lichen Sclerosus Pregnancy Journey

Ever wondered about pregnancy and lichen sclerosus? Click to read Lisa's lichen sclerosus pregnancy journey.

Image of Jaclyn wearing red lipstick and a red t-shirt with long brown hair and cat-eye liner pointing at the title text, which reads: "Ablative Laser for Lichen Sclerosus: Is It an Effective Treatment?".

November 2, 2023

Ablative Laser for Lichen Sclerosus: Is It an Effective Treatment?

Steroids do not work for everyone; so what about ablative laser for lichen sclerosus? Is it a good treatment option? Click to learn more.

Meet the Executive Board

Lauren Connelly

President

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Kathy Ruiz-Carter

Vice-President/Treasurer

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Jaclyn Lanthier

Secretary

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Words from the Community

The good thing is I found your Website and I've learned so much from Dr Jill and Jaclyn and you. I'm back to using the clobetasol ointment a couple times a week to prevent flare ups. I learned that the LS skin down there is thicker than regular skin. So I feel comfortable using the ointment. It's so nice to feel normal down there again. Well almost..... What a difference. I can sleep all night without waking.. Wish I had good information years ago. Probably would not have fused. But doctors just don't know that much about LS. At least back in 2016. The Website is so informative with the different guests and actual LS sufferers telling their experiences.

Julia

I hesitantly stumbled upon your podcast, through your instagram. I didn’t want to realize that many more people were struggling with the same thing as me. My diagnosing doctor passed away this year and I know I will not be able to replace him. I was referred to him after being treated like I was having multiple partners & chronic yeast infections. I am still searching for a good fit for my disease and appreciate your podcast for what it is. 10/10 would recommend! Thanks for all you do & say!

HCT

I wanted to express my gratitude for all you do and share some additional appreciation because I really do say a huge thank you from my heart, this two meet ups have been so helpful. I look forward to our next meet up.

Carrie

Based on what I have learned from your show, I am convinced I have LS, and am armed with the knowledge and confidence to advocate for myself when I finally do see her. In the meantime, I'm listening to the podcast daily and using some of the tips you've shared to help me deal with the symptoms (mainly the itch!). Thanks to you, I haven't had to suffer for years like you and so many others have. I, and I'm sure so many others, am eternally grateful for your courage and honesty.

JoAnn

I just want to say ths LS support network has done wonders for me, my mental health and coming to terms with my condition.

Mia

Hi Kathy! I just wanted to write a note to you and tell you I was diagnosed with LS yesterday. I’m 27. I was super overwhelmed and felt like my health issues were spinning out of control. I also have celiac disease (diagnosed 9 years ago) and Hashimoto’s (diagnosed 3 months ago). Since watching your videos, I actually felt like everything began to make sense! I have so much more clarity now and a lot less guilt about my issues! And especially thanks to you, I was able to apply the ointment on correctly on my first night!! Thank you so much for the work you do. It is so incredible to feel a network of support right when I need it 💖

Lexie

Instagram

I have listened to MOST of Kathy's podcasts, and they have been a sanity saver!

Cathy

I just listened to one of your podcast, "The Worst Symptoms of Lichen Sclerosus" and the video clip of how to apply clobetasol on the lesion that you interviewed Dr. Jill Krapf! I was feeling like God finally listened to my prayers and brought your website to me. I have always wanted to have a community in which I have people who went through the same issues understand and support me. Thank you so much for having it. I am looking forward to being in the visual meet with you in the future.

Ann

Hi Kathy: I have never contacted a podcaster before but I just need you to know how very grateful I am to you. I just got diagnosed with LS two weeks ago and my story is sadly similar to everyone else’s. I received zero education on the condition or how to apply the steroids. This podcast has provided me with helpful information and more importantly it also provides hope and humor! I am also not a post menopausal woman so it has been wonderful to hear from other woman like me as well. Anyway, I honestly don’t know what I would have done without you and your excellent podcast. Thank you, thank you, thank you for putting this out into the world!

Stephanie

Hi, I am 77, and after 4 yrs of hell with Itch, burning pain and discovering hell. I am sleeping better, and it is due to what I have learned from you, and using less clob, and private packs and use emollient, and using soaking has made a big difference. July 17th saw my GYN and he told me my vulva is looking the best it has ever looked. Thank you for all the education.

Sandy

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