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

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

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. If you're more of a visual person, enjoy this year-end review with our Executive director Kathy Ruiz-Carter. https://youtu.be/MejM6rg2gMc 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…
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Platelet-Rich Plasma for Lichen Sclerosus: Experimental Treatment Series

Platelet-Rich Plasma for Lichen Sclerosus: Experimental Treatment Series

Introduction Experimental treatments show promise in managing a condition but have yet to be thoroughly evaluated for efficacy, safety, and acceptability. Think of it like a non-approved treatment option; it may or may not work. In the context of lichen sclerosus, when discussing experimental treatment options, I mean interventions, medications, or procedures that have not yet shown to be fully effective as a treatment but show promise in helping with symptom management. Some of these experimental treatments include platelet-rich plasma for vulvar lichen sclerosus, laser, and phototherapy. I often get asked about platelet-rich plasma for lichen sclerosus. For example, folks ask, “Someone on a forum mentioned platelet-rich plasma; what is this?” or “Is platelet-rich plasma an effective treatment for lichen sclerosus?”. In today’s post, I will take a deep dive into platelet-rich plasma by addressing what it is, what the procedure involves, and what the science says for vulvar lichen…
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Discussing The Mona Lisa Double-Blind Study with Leia Mitchell

Discussing The Mona Lisa Double-Blind Study with Leia Mitchell

In this episode, we look at the clinical trial done around Fractionated Carbon Dioxide Laser, also known as the Mona Lisa laser, with Leia Michell. We discuss why they felt the research was needed, who was in the trial, how they performed the trial, and the results. If you've got laser treatment, please let us know how it was for you in the comments below. Meet Leia Mitchell, a passionate and knowledgeable physician assistant whose expertise lies in the realm of Lichen Sclerosus treatment. Her commitment to the comprehensive understanding and management of this condition has led her to investigate the Mona Lisa laser's potential for helping those with Lichen Sclerosus. As a board-certified physician assistant, Leia's extensive experience and background allow her to provide expert guidance and advice to medical practitioners seeking the latest innovations in Lichen Sclerosus's care. Leia's dedication to her field has resulted in the groundbreaking…
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Take Part In The Revolutionary GRIDD Study Today

Take Part In The Revolutionary GRIDD Study Today

As a lichen sclerosus patient, you are invited to participate in ground-breaking research that is being conducted by the International Alliance for Dermatology Patient Organizations (also known as GlobalSkin) in collaboration with researchers at Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany). The Global Research on the Impact of Dermatological Diseases (GRIDD) project aims to collect global data on the impact of dermatological conditions on patients’ lives. To collect this impact data, we have developed the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, a scientifically sound questionnaire capable of measuring the impact of conditions of the skin, hair, nails, and mucosa from the patient’s perspective. As a Member of GlobalSkin, Lichen Scleorsus Support Network is supportive of this important project. You are the expert, and your opinion matters! By participating, you will be helping to show clinicians, researchers, and policymakers the true impact of living with your dermatological…
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Discussing The Challenges of Lichen Sclerosus Research with Sophie Rees

Discussing The Challenges of Lichen Sclerosus Research with Sophie Rees

The surprising roadblocks of Lichen Sclerosus research - and how they were overcome! In this episode, you will be able to: Delve into the challenges faced in Lichen Sclerosus research and the consequences for affected individuals. Realize the value of spreading awareness about vulval and vaginal conditions to empower women. Grasp the essential role education and accurate diagnosis play in successfully treating Lichen Sclerosus. Investigate the impact of diverse and inclusive language in Lichen Sclerosus research on patient well-being. Recognize the importance of increasing healthcare access and improving treatments for Lichen Sclerosus patients. My special guest is Sophie Rees. Sophie Rees is a medical sociologist specializing in qualitative and mixed methods research to explore patient experience. She works at the University of Bristol Trials Centre, conducting qualitative research within randomized controlled trials. Sophie is the Chief Investigator of the ESRC-funded project Living with Vulval LS: A Mixed Methods Study, using…
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