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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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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Looking at Lichen Sclerosus Diet Studies for Hope and Guidance

Looking at Lichen Sclerosus Diet Studies for Hope and Guidance

Lichen Sclerosus diet studies are few and far between but our guest Erica Eberl went on the hunt so we can discuss what we can learn from the science. Erica Eberl is a 23-year-old dietitian and LS warrior who was diagnosed less than a year ago. She has used her skills and resources to research LS and diet and shares her findings to help others. After Erica Eberl was diagnosed with LS, she did extensive research on Lichen Sclerosus and diet and found three studies that she was able to share. One LS diet study from Italy found that avocado and soybean extract cream and a dietary strategy improved symptoms in women with mild to moderate LS, although it wasn't as effective as corticosteroids. A case-control study from Italy found that increased consumption of carotenoids (precursors to Vitamin A) was associated with less LS. Lastly, a study from Portugal found…
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