Lichen Planus Patients - Share Lived Experience & Resource Needs
New lichen planus resource
Hi everyone! My name is Kathy, and I’m the President and Executive Director of LichenS Support Network (LSSN). We’re a U.S.-based 501(c)(3) nonprofit, but our community and educational work reach people around the world.
Some of you may know us from our work in lichen sclerosus. Over the past year, we’ve been expanding our work to better support people living with lichen planus in all of its forms, and we recently launched a dedicated lichen planus site, AboutLichenPlanus.com.
I wanted to introduce ourselves and share what we’ve been working on, but more importantly, hear from you about what would actually be useful.
We’re slowly building out the site with evidence-based information that is written for patients rather than for medical journals. Right now, you’ll find a general guide to understanding lichen planus, a more detailed cutaneous lichen planus hub, information about why LP can be difficult to diagnose and why people are sometimes misdiagnosed, information comparing vulvar LP and lichen sclerosus, blogs, videos, podcasts, and lived-experience stories. Our content is medically reviewed to ensure evidence-based accuracy.
One of those stories is from Melanie, an LP warrior who has lived through a long and complicated journey with both lichen sclerosus and several forms of lichen planus, including cutaneous, esophageal, and vulvovaginal LP. We really want lived experience to sit alongside the medical information on the site, not as an afterthought, but because there are parts of living with LP that clinical information alone simply doesn’t capture. If you would like to share your story via YouTube or a blog, please email [email redacted] – we’d be happy to feature you.
We’ve also created an interactive doctor-visit and self-advocacy planner. You can enter your symptoms, medications and treatments you’ve tried, keep track of changes, choose questions you want to ask your healthcare provider, add your own questions, and then print everything as a worksheet to bring to your appointment. The information you enter stays locally in your browser; LSSN does not receive or view what you type into the tool.
And there is a lot more we want to build, particularly resources covering the different LP subtypes, diagnosis and treatment, navigating healthcare, self-advocacy, and more patient and caregiver experiences.
We’d love for you to check out and explore what we have so far at aboutlichenplanus.com, you’re very welcome to poke around the site. There’s also an option there to join our newsletter if you’d like to hear about new LP resources as we add them. And if you find it helpful, please share with others.
But we don’t want to sit behind our computers and guess what people with LP need.
So I’d really love to hear from this community: What do you wish someone had explained when you were diagnosed? What has been hardest to find reliable information about? What questions do you still have? And what kinds of resources would genuinely make living with or navigating LP easier for you?
Feel free to comment here. We’ll be reading and listening.
Thanks for letting us introduce ourselves and, most importantly, for letting us learn from this community.