Introduction
I can’t believe I’m saying this, but 2023 is moving quickly towards a close. With that, we at LSSN wanted to do a little end-of-year reflection on this past year and offer some hope for the future. We will review some of the key events and milestones from LSSN, as well as exciting LS research that came out and what to look out for from us in 2024.
First Up, Some Gratitude
First of all, we want to extend a tremendous and heartfelt thank you to our beautiful LS community. We appreciate all that you do to spread the word about us, telling your doctors about LSSN, liking and sharing our content, and donating.
Kathy and I have the special honor of knowing many of you through the LSSN’s free bi-weekly virtual meetups. Kathy and I have been at it for a long time, with the first meetup in 2020. Things have changed a lot since then, but one thing that has remained consistent is the wonderful people who attend these meetings. When one of your fellow warriors is having a hard time, the entire community shows up with compassion, warmth, and a gentle love that is unique to our community. We thank each and every one of you for showing up and holding space for everyone’s journey.
We are grateful to each and every one of you who is a part of this community.
Summits
Let’s play a word association game here for a minute.
What’s the first word that comes to mind when I say “LSSN”?
If you thought ‘summit’ or ‘(W)holistic Healing Summit,’ you are in the majority. Many people associate us with our annual summits, teeming with leading LS experts around the globe.
In fact, we have been hosting Summits for the LS community ever since our President, Lauren, said to Kathy, “Hey, I think we should do annual summits to help share evidence-based education with our community,” and well, the rest is history!
This year, we actually hosted not one but two summits!
(W)holistic Healing Summit 2023
Our first summit was the (W)holistic Healing Summit 2023. It spanned six days with 31 sessions from 17 of the leading experts across the globe. A whopping 681 people attended this summit. In these 31 sessions, we learned about LS, pregnancy, menopause, pelvic health physical therapy, research, sexual health, and more!
I (Jaclyn) had the honor of speaking at this event, where I presented a talk called Current Research in Lichen Sclerosus: Highlights from 2020-2023. In this talk, I shared a bunch of new research that has emerged in the last few years, why it is so important, and what it means for us. I also ended with a ‘hope for the future’ and my thoughts on where LS research is heading.
But that’s not all!
Introducing LSSN’s Mini Summit
Fueled by our passion for a better world for folks with vulvar conditions, we hosted a mini-summit on different vulvovaginal health conditions in the fall. We were motivated to host this event after seeing countless individuals struggle with what they thought was their LS flaring for months, only to find out later they had a secondary condition. This event spanned three days, had seven expert speakers across 14 sessions, and we had 135 attendees. We learned about genitourinary syndrome of menopause, hidradenitis suppurativa, persistent nerve pain, lichen simplex chronicus, and more!
You can get the replays here if you missed this incredibly informative event.
Events
We don’t just do summits and virtual meetups here at LSSN.
We also host live events throughout the year.
January 17, 2023, is World Lichen Sclerosus Day, and to raise awareness for LS, we hosted two live events. The first event was a live presentation and Q&A with Dr. Ulrike Deheack from the BC Centre for Vulvar Health in Vancouver, BC.
Check out the replay below.
Later that evening, we did another live with Dr. Jill Krapf, who took your questions for one full hour! You can catch the replay below.
And that’s not all!
In April 2023, to commemorate National Vulva Awareness Day, LSSN hosted a Vulva Awareness and Appreciation event with me (Jaclyn) and Penny from Wellbeing by Penny. I began the session by giving a comprehensive overview of vulvar anatomy and physiology, including what each part of the vulva is called, where it is located, what its general function is, and how it may or may not be affected by LS. After this educational piece, we were guided through a beautiful, gentle movement/yoga and vulva appreciation meditation by the wonderful Penny.
Check out the video below and feel free to revisit for the yoga/meditation. And, if you enjoy the yoga/meditation session and want to improve your pelvic health, consider joining Penny’s Pelvic Health Yoga Membership for people with LS and chronic pelvic pain by clicking this link. Use code ‘JACLYN’ for a 7-day free trial + 30% off of your first month.
Content
OK, y’all, 2023 has been a BOOMING year for LS-related content. We deliver free content to you weekly in the form of blog posts and YouTube videos.
Some of our popular blogs include:
- The clitoris and lichen sclerosus: what you need to know
- Grooming with vulvar lichen sclerosus
- Chronic pain and lichen sclerosus: what’s going on
Some of our popular videos include:
- Using non-surgical lysis to reverse clitoral fusing
- Unfusing your clitoris (3-evidence-based ways to unfuse + bonus)
- Clitoral myofascial release for lichen sclerosus: unfuse without surgery
Be sure to share our content widely with your network and support groups! It’s free and really helps us to fulfill our mission of sharing evidence-based information with the LS community.
Let us know your favorite blog or video in the comments below!
Cornerstone Pieces
We also had the pleasure of offering you two cornerstone pages. The first is a comprehensive LS diet and nutrition overview written by the brilliant Heather Cooan. Heather is a Functional Nutritionist and Educator helping women suffering from autoimmunity and cancer take control of their health and care through education, data-driven nutritional therapy, and strategic lifestyle design. Learn more about Heather on her website. Check out this piece here.
I (Jaclyn) had the honor of writing an LS treatment piece, which provides an overview of LS treatments, experimental therapies, adjuncts, and add-ons. This piece was highly vetted by our medical advisory board and draws on over 40 peer-reviewed medical articles. Check out the piece here.
Zine
This year also saw our first-ever LSSN Zine! Our Zine is a free eBook/virtual magazine that includes patient stories and patient perspectives from around the globe. The LS zine uses art, poetry, interviews, and storytelling to highlight lived experiences with LS.
Except from Gina:
“Contributing to the LS Zine was a beautiful and powerful experience. And seeing the LS Zine when it was completed was just as amazing. I saw my own experiences reflected in each contribution.
Art by @StudioCornelius demonstrates the contradictory experience of having a “lonely secret” while finding “luminous strength.” Robina Wason’s “Dorsally Recumbent” takes me back to the doctor’s exam room, while Liz Lundberg’s “I’ll try anything” mirrors my daily symptom and treatment tracking. And then there is Kelly B’s flower, which calls me back to self-love and self-care.”
Virtual Meetups
For those who do not know, LSSN offers free, bi-weekly virtual meetups. They take place every other Saturday from 2–4 PM ET and 7–9 PM ET and are hosted by our executive director, Kathy, and myself (Jaclyn). This is a safe space to get evidence-based information about LS, support, ask questions, connect with others in the community, and share your stories.
This year, we logged a record-breaking number of attendees–over 859 people with LS have attended this year!
What an honor it has been to bear witness to such brave and beautiful souls in the virtual meetup space.
We get attendees from across the globe, including Canada, the USA, the UK, Spain, India, Argentina, New Zealand, Mexico, Australia, Croatia, and more!
If you haven’t attended but want to, sign up here.
LSSN Joined Global Skin to Help Us Become Better Patient Advocates
In 2023, LSSN became a member of Global Skin. Global Skin is a unique global alliance committed to improving the lives of patients worldwide. They work to nurture relationships with members, partners, and all involved in healthcare – building dialogue with decision-makers around the globe to promote patient-centric healthcare. GlobalSkin's work is founded on three pillars: research, advocacy, and support.
Learn more about Global Skin and its work here.
Since becoming a member, we have had access to resources to help us provide better patient advocacy and support. I (Jaclyn) went to their conference in Brussels, which was centered around the theme of elevating the patient voice in awareness and advocacy work. I made some wonderful connections and have integrated a lot of the learnings from the conference into LSSN's awareness work.
But that's not all. In the summer of 2023, I (Jaclyn), on behalf of LSSN, got a scholarship for the EUPATI Patient Expert Training Program. This starts in January 2024 and will end in late fall 2024. It is an intensive educational course designed to help patient leaders become better patient advocates by teaching about medicines research and development, how to work with pharmaceutical companies and get them interested in our cause, and how to become involved in Health Technology Assessment.
We Also Joined the British Association of Dermatologists and the National Coalition of Autoimmune Patient Groups
This year we also joined the British Association of Dermatologists (BAD) patient support groups and dermatology charities. BAD is on a mission to champion dermatology in the UK for the public benefit. Although we are based in the United States, we are an international organization and serve people worldwide. The United Kingdom is our second largest patient pool, following the US.
Through our connection with BAD we are able to reach more patients looking for information as well as have funding opportunities through their Patient Support Group (PSG) Fund.
We look forward to developing this relationship and finding community with other PSGs. You can find the listing on their website by clicking here.
Last but not least, we joined the National Coalition of Autoimmune Patient Groups (NCAPG), a coalition of 50 organizations representing numerous diseases, such as lupus, psoriasis, rheumatoid arthritis, multiple sclerosis, Sjögren’s, celiac disease, relapsing polychondritis, and the many other patients who are immunocompromised. The NCAPG’s mission is to convene, support, and amplify the voice of autoimmune, immune-mediated disease patients and patient groups to enhance capacity collaboration and provide relief.
This year, we were able to spread awareness about lichen sclerosus at the Autoimmune Community Summit through our virtual booth on October 6 and 7. We had hundreds of people stop by our booth and download our LS brochure.
We will continue to look for associations and other organizations we can partner with to grow and spread information about lichen sclerosus.
LS Research and Hope for the Future
There has been increasing interest in lichen sclerosus in the world of dermatology and gynecology, and we have been seeing a surge of new research coming out over the last few years.
Briefly, because I could write dozens of papers on these articles, we learned that not everyone with LS has an itch, that LS can affect people of reproductive age (not just children and post-menopausal people), that fat grafting could play a role in reversing scarring, and the deep impacts of quality of life are making their way to big medical conferences.
There are new treatments in the pipeline with active clinical trials, and there are new research projects looking at the impact of sexual health on couples with VLS. Learn more about the couple’s and VLS study, which is actively recruiting, and consider participating if you are eligible here.
Overall, I (Jaclyn) am noticing a massive interest in lichen sclerosus research across the globe. Healthcare providers, researchers, and pharmaceutical companies are becoming more and more involved in research and work to improve the future of people with lichen sclerosus. I am hoping for more treatment options, better diagnoses, fewer misdiagnoses, and more options to improve overall quality of life in the next few years.
We Won A 2023 Great Non-Profit Award!
Whoop, whoop! We are so excited to have received a Great Non-Profits badge for 2023. Check out all the great reviews we have received, and feel free to leave us a review here.
End-of-Year Giving
LSSN is Breaking Through Misconceptions, Paving the Way for Hope this year for GivingTuesday. That means we’re raising money to provide more opportunities to provide you with quality evidence-based education!
Such as:
- More blogs
- More videos
- Podcast episodes
- Longform information pages
- Live virtual events
Because knowledge is power, and our mission is to empower people with lichen sclerosus through evidence-based education and support.
If this lights you up, give what you can and be part of the change for the future of lichen sclerosus. Every dollar helps.
Get more details and tickets to our GivingTuesday live virtual lichen sclerosus event with Dr. Erin Foster by clicking here.
Will you be part of paving the way for hope for people with LS? Donate early.
Conclusion
Alright, that’s a wrap for LSSN’s year in review. Again, we express our deepest gratitude to all of you and wish you a great holiday season. You can look forward to even more content, some incredible events, summits, and more in 2024.
Stay In The Loop! Never Miss A Blog Post, YouTube Video, Podcast Episode, Event, Or Product Launch By Getting On Our Newsletter!
Sign up for LSSN’s monthly newsletter here.
Sign up for TLLC’s newsletter here.
Reach Out To Me
Whether you are debating booking a support call with me, have a quick question, or want to share something related to my content, I can be reached via:
Email: Jaclyn@lostlabia.com
DM: @thelostlabiachronicles on Instagram, Facebook, and TikTok.
Support Resources
FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.
Feel free to book a 1:1 call with me to discuss mental health or sexual health or have general questions about lichen sclerosus. Simply click this link to learn more about lichen sclerosus peer support calls.
LSSN Membership – sign up here.
Check out my LS resources page here for a more detailed list of free and paid support resources.
I have recently been diagnosed with LS and been prescribed Dermovate/Clobestasol Propionate which I used everyday for the required 6 weeks and now twice a week. I was examined by my doctor after the 6 weeks and she said I should try to reduce my use of the Clobestasol. This advice does seem to be backed up by the research which seems to advise a maintenance programme of twice a week.
Reading around the topic the advise in the UK is at variance with the American which seems to suggest Dermovate/Clobestasol Propionate for 4 weeks, then every second day for 4 weeks and then a maintenance of twice per week.
My treatment has seen an improvement. Advice would be gratefully received.
Yes, the EU and NA guidelines differ slightly, but are still similar. At the end of the day, dosing should be based on how your respond to the medication and what your doctor recommends based upon your clinical examination. You can ask them about your specific dosing protocol (we are all different because we all respond differently) at your next appointment. Remember that guidelines are just that, guidelines. At the end of the day it’s how you respond.