Introduction
Welcome to our blog! Today, we explore an important topic that affects many but is often misunderstood: Vulvar Lichen Sclerosus (VLS). This chronic inflammatory skin condition primarily affects the vulvar region and has long been known to be rare. However, recent studies and a European scoping review reveal new insights into its prevalence, burden, and challenges.
This post examines how common VLS is and why it qualifies as a high-burden condition despite lacking adequate funding and research. We discuss the criteria for classifying a disease as “rare.” Finally, we share personal insights from individuals with firsthand experience with VLS.
Let’s dive in!
Disclaimers
*This post comes from research on VLS and rare diseases and does not constitute medical advice.
**If this post is helpful to you, we’d love your support so we can continue providing important education like this. Donate today, volunteer with us, or share our posts in your support groups.
Prevalence of Vulvar Lichen Sclerosus
Prevalence is a term used to describe how common a particular disease or condition is within a population at a specific time. It’s a way to measure the number of people who have the disease at any given moment.
Historically, VLS was considered a rare condition, but recent research indicates it is more common than previously believed. While the exact prevalence is unknown, a systematic review and meta-analysis published in the Journal of the American Academy of Dermatology in 2022 estimated that the prevalence of VLS ranges from 0.1% to 3.0% in the general population (Li Ho, 2022). A paper by Fischer (1996) showed VLS in 1 out of 10 patients presenting to specialty clinics, and the BC Centre for Vulvar Health sees 550+ patients per year (Sadownik et al., 2020).
What Does it Mean to Be a Rare Disease?
Different geographical regions have different definitions of what constitutes a rare disease. In the United States, for example, a disease is considered rare if it affects fewer than 200,000 people, approximately 6 per 10,000 individuals (0.06%). In Europe, a disease is considered rare if it affects no more than 5 per 10,000 people (0.05%) (Montserrat, Antoni, and Domenica Taruscio, 2019).
The research papers cited above suggest that VLS is not as rare as once thought.
Vulvar Lichen Sclerosus as a High Burden and Underfunded Condition
Despite its relatively high prevalence, VLS remains underfunded and under-researched. A European scoping review has highlighted that VLS is, in fact, not rare but a high-burden, under-researched medical condition that fails to be recognized and adequately treated in a significant proportion of patients (van Tuy et al., 2023).
The review emphasizes that diseases like VLS, which have a high disease burden but are poorly understood and have few treatment options, deserve prioritization for research funding. This is crucial to improve diagnosis, treatment, and overall patient outcomes.
We need more research on prevalence across different age groups to provide a more robust statistic, but for now, it is not rare.
I (Jaclyn) suspect that it is sometimes misclassified as rare because prevalence numbers do not accurately map onto the reality of the number of people with this condition due to doctors misdiagnosing patients, access to proper medical care, culture, stigma, shame, and more. If all doctors were properly trained and equipped to diagnose vulvar skin conditions, the prevalence numbers would increase, further supporting the idea that VLS is not a rare condition
My Take on Vulvar Lichen Sclerosus as a Rare Condition
My (Jaclyn’s) opinion on VLS is it is not rare. I remember when I started to open up on my personal social media about my diagnosis. I had an influx of emails and DMs from family friends, childhood friends, and university colleagues, saying things like, “OMG, I have this too; I thought I was the only one,” or “I have all these symptoms, I’m going to try and advocate for a diagnosis,” etc. Having spoken to 100s of people with VLS via my 1:1 peer support calls and supported 100s via LSSN’s support resources. Further, some massive online support groups have over 10-20K members. This is NOT rare.
Conclusion on Is Vulvar Lichen Sclerosus Rare?
Vulvar Lichen Sclerosus is not as rare as once thought, with a significant prevalence among certain demographic groups. However, it remains a high-burden condition that lacks adequate funding and research. The recent European scoping review underscores the need for increased funding and research to better understand and manage VLS, ultimately improving the quality of life for those affected by this condition.
By raising awareness and advocating for more research funding, we can ensure that VLS receives the attention and resources it deserves, leading to better diagnostic tools, treatment options, and support for patients and their families. Understanding the true prevalence and burden of VLS is crucial for improving healthcare outcomes and addressing the needs of those affected by this condition.
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 considering booking a support call with me, have a quick question, or want to share something related to my content, you can reach me 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 if you struggle with grief and emotions. Simply click this link to learn more about lichen sclerosus peer support calls.
LSSN Membership – sign up here.
For our resources page, click here.
References
Li HO, Bailey AMJ, Tan MG, Dover JS. Lasers as an adjuvant for vulvar lichen sclerosus: A systematic review and meta-analysis. J Am Acad Dermatol. 2022 Mar;86(3):694-696. doi: 10.1016/j.jaad.2021.02.081. Epub 2021 Mar 5. PMID: 33684499.
Montserrat, Antoni, and Domenica Taruscio. “Policies and actions to tackle rare diseases at European level.” Annali dell’Istituto Superiore di Sanità 55.3 (2019): 296-304.
“Scoping Study on High-Burden, Under-Researched Medical Conditions – EADV.” EADV, 3 Apr. 2023, eadv.org/2023/04/03/scoping-study-on-high-burden-under-researched-medical-conditions/. Accessed 20 Jan. 2025.
“What You Should Know about Undiagnosed Rare Diseases | NORD.” Rarediseases.org, 27 July 2022, rarediseases.org/understanding-rare-disease/undiagnosed-diseases/.
“White Paper: Rare Diseases and Orphan Drugs: Where Are We Now?” Evidera, www.evidera.com/white-paper-rare-diseases-and-orphan-drugs-where-are-we-now/.
