Living with Lichen Planus & Lichen Sclerosus | Melanie’s Story of Diagnosis, Pain & Hope

*Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan.

Today, we are joined by brave lichen scleorsus & lichen planus warrior, Melanie, to witness her incredible journey. We chat about pediatric vulvar skin conditions, lichen sclerosus, and various types of lichen planus in multiple body parts. Melanie's story is about pain, strength, wisdom, and hope.

We know there are many #lichenplanus warriors out there and warriors with both #lichensclerosus & #lichenplanus. We hope this video helps raise awareness around these conditions.

Melanie's Bio:

Hi, I’m Melanie, a 23-year-old living in the Netherlands. I’ve been living with Lichen Sclerosus and Lichen Planus since childhood, though it took time to grow into my diagnoses and really understand what they meant for me. It’s been a journey of learning, coping, and finding ways to live fully with chronic conditions. I share my story to help others feel less alone and to bring more awareness and compassion to life with LS and LP.

Caveat added by Melanie:
I didn’t get the chance to clarify that I was speaking only about my personal situation that for me it wasn’t possible due to my insurance, and not making any general statement about treatment. Because there are some insurances that will allow LP patients to take them.

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Timestamps

0:00 - Intro
3:05 - Melanie's early symptoms
4:45 - Lichen sclerosus and planus diagnosis
10:20 - Challenges and misunderstandings with healthcare providers
12:35 - Impact on quality of life
16:47 - What Melanie wishes doctors knew about lichen planus & sclerosus
19:45 - Different types and locations of lichen planus for Melanie
25:28 - Past and current treatments for LS & LP
32:00 - Caring for LS & LP - Lifestyle & Diet
34:44 - Mental health support
36:14 - Melanie's message to newly diagnosed folks
40:46 - Outro

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Important Links

Get my FREE eBook on vulvar lichen sclerosus at www.lostlabia.com/lsebook

Want to work with me? I offer 1:1 vulvar lichen sclerosus peer support calls. Book here: www.lostlabia.com/supportcall

Sign up for LSSN's FREE virtual support meetups for vulvar lichen sclerosus at www.lssupportnetwork.org/connect

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#PenileLichenSclerosus #LichenSclerosus #MensHealth #Dermatology #Urology #RareDiseases #ChronicIllness #SkinHealth #PatientEducation