65 episodes

Our journal of learning about and living with Lichen Sclerosus from a patient's point of view. Bringing community and awareness to a disorder that hardly anyone knows about. Join me as I research Lichen Sclerosus from every angle and share my struggles living with it. My hope is to build a community of survivors so we can affect change in our lives and the research.

Lichen Sclerosus Podcast Kathy

    • Health & Fitness
    • 4.9 • 53 Ratings

Our journal of learning about and living with Lichen Sclerosus from a patient's point of view. Bringing community and awareness to a disorder that hardly anyone knows about. Join me as I research Lichen Sclerosus from every angle and share my struggles living with it. My hope is to build a community of survivors so we can affect change in our lives and the research.

    Unraveling The Hormone And Microbiome Puzzle In Lichen Sclerosus

    Unraveling The Hormone And Microbiome Puzzle In Lichen Sclerosus

    Hey friend! I recently had the pleasure of chatting with Dr. Melissa Mauskar, a true rockstar in the world of vulvar health research. She illuminated some fascinating new findings about the hormone and microbiome landscapes in lichen sclerosus.
    I walked away feeling so hopeful about how this work might improve patient care down the road! 🙌 Dr. Mauskar broke down the key takeaways in an accessible way – no need for a medical degree to follow along! Whether you have lichen sclerosus yourself or treat patients, I think you'll find this chat insightful.
    A few highlights that caught my ear:
    The role of progesterone and other hormones in LS skin How treatment impacts microbiome diversity Exciting areas for future research. Dr. Mauskar's passion for patient-centered care and collaboration across specialties to move the needle is inspiring. She helped me understand how this study into hormones and the vulvar microbiome in lichen sclerosus, while small, contributes an important puzzle piece to better understanding and treating this chronic condition.
    Let me know what intrigued or surprised you! I always love hearing your experiences and thoughts. And if you appreciate Dr. Mauskar and other clinicians advancing vulvar health, show some love in the comments! ❤️
    In this episode, you will be able to:
    Explore the intricate connection between hormonal balance and lichen sclerosus for a holistic understanding. Uncover the role of the microbiome in lichen sclerosus and its impact on treatment approaches. Create personalized treatment plans tailored to individual needs for more effective management of lichen sclerosus. Gain insights into providing comprehensive care for vulvar health, enhancing patient outcomes. Discover the benefits of collaboration in advancing research and care for vulvar health. My Special Guest Is Dr. Melissa Mauskar
    Dr. Melissa Mauskar,  an Associate Professor in the Department of Dermatology and the Department of Obstetrics and Gynecology at UT Southwestern Medical Center, is not your typical expert. She's a trailblazer in the field, serving on the board of the newly founded Vulvar Dermatoses Research Consortium and as the secretary general for the  North American branch of the International Society for the Study of Vulvovaginal Disease.
    With a deep commitment to patient care and a particular focus on lichen sclerosus, Dr. Mauskar's latest research delves into this condition's hormonal and microbiome aspects. Her dedication and expertise in unraveling the complexities of lichen sclerosus make her a true star in the field.
    The Key Moments In This Episode Are:
    00:00:12 – Introduction to Lichen Sclerosis Podcast

    00:02:44 – Research Project Background

    00:09:36 – Study Methodology and Findings

    00:12:42 – Potential Impact and Future Research

    00:15:05 – Skin Hormone Levels and Implications

    00:17:02 – Significance of Study Results

    00:18:01 – Understanding Microbiome

    00:20:35 – Treatment Approach and Microbiome

    00:24:33 – Role of Yeast in Lichen Sclerosis

    00:27:30 – Future Research and Hormonal Influences

    00:33:30 – Recognition of Healthcare Providers

    00:34:06 – Importance of Care

    00:34:52 – Momentum in Menopause Research

    00:35:43 – Need for Specialized Healthcare

    00:36:31 – Conclusion and Call to Action
    The Resources Mentioned In This Episode Are:
    Link to the abstract for the study mentioned in the podcast: This will provide detailed information about the study conducted by Dr. Mauskar and her team, “Assessment of the Cutaneous Hormone Landscapes and Microbiomes in Vulvar Lichen Sclerosus,” allowing you to delve deeper into the findings and implications. https://pubmed.ncbi.nlm.nih.gov/38368928/ Dr. Mauskar's Instagram profile: Follow Dr. Mauskar on Instagram to stay updated on her work, research, and insights in the field of dermatology and women's health. https://www.instagram.com/melissamauskarmd/ Contact

    • 36 min
    Unlocking LS Wisdom: Exploring the Comprehensive Content of LSSN

    Unlocking LS Wisdom: Exploring the Comprehensive Content of LSSN

    Get ready for a heart-pounding year-end review of the Lichen Sclerosis Support Network's incredible work. From informative videos to virtual meetups, they're empowering LS warriors like me. But just when everything seems perfect, a shocking revelation threatens to unravel all their progress. Will they overcome this unexpected obstacle? Find out on the Lichen Sclerosus Podcast!
    In this episode, you will be able to:
    Discover the latest updates and initiatives from the Lichen Sclerosis Support Network (LSSN) in their year-end review.
    Explore diet and lifestyle treatment resources that can help manage Lichen Sclerosis (LS) and improve your overall well-being.
    Dive into the digital pages of LS Zine, a magazine dedicated to providing valuable insights and support for individuals living with LS.
    Learn about the whole-body approach of the Wholistic Healing Summit and what next year's summit will focus on.
    Learn about the other exciting projects and initiatives undertaken by the Lichen Sclerosis Support Network (LSSN) to support individuals dealing with LS.
    The key moments in this episode are:
    00:00:11 - Introduction
    00:01:10 - Mission of LSSN
    00:02:40 - Giving Tuesday
    00:11:47 - What's New On The Website
    00:14:42 Blog Posts
    00:18:08 - Video Posts
    00:22:00 - LSSN YouTube Channel 
    00:26:07 Virtual Meetups
    00:30:56 LS Brochures
    00:33:49 LSSN Shop
    00:36:57 Long Form Content
    00:41:04 LS Zine/LSSN's Digital Magazine
    00:43:09 LSSN Board/Medical Advisory Board
    00:46:18 Wholistic Healing Summit
    00:47:50 LSSN Mini Summit: Vulvovaginal Conditions
    00:50:02 Who have we partnered with?
    00:57:40 - Reflecting on Accomplishments and Future Goals


    Check out all the ways Lichen Sclerosus Support Network can help you at lssupportnetwork.org.
    Visit our website at Lichen Sclerosus Support Network to access our resources and information. https://lssupportnetwork.org
    Check out our blog for over 42 informative posts on Lichen Sclerosus. https://lssupportnetwork.org/blog
    Check out our 32 video educational posts on everything LS related. https://lssupportnetwork.org/videos
    Attend our virtual Meetups to connect with others and learn more about Lichen Sclerosus. https://lssupportnetwork.org/connect
    Find a healthcare provider in our directory who specializes in Lichen Sclerosus. https://lssupportnetwork.org/providers
    Browse our brochures for helpful information on managing Lichen Sclerosus. https://lssupportnetwork.org/brochure
    Shop at our online store for Lichen Sclerosus-related products and merchandise. https://lssupportnetwork.org/shop
    Support our education fund by making a donation on Giving Tuesday or becoming a monthly donor. https://lssupportnetwork.org/givingtuesday
    Stay updated on news and events at LSSN by subscribing to our newsletters. https://lssupportnetwork.org/subscribe
    Contact with Functional Nutrition Therapist Heather Cooan on her website at https://heathercooan.com
    Check out our boards at https://lssupportnetwork.org/lssn-board
    Get a copy of our digital magazine at https://lszine.lssupportnetwork.org
     
    https://lssupportnetwork.org/
    https://www.youtube.com/https://www.youtube.com/channel/UCQXU-nhfnn-nScR_5VyUdCQ
    https://www.linkedin.com/in/lssn
    https://www.facebook.com/lichensclerosussupportnetwork
    https://instagram.com/lichensclerosussupportnetwork

    • 58 min
    Why You Need to be at the LSSN Mini Summit

    Why You Need to be at the LSSN Mini Summit

    Have you heard about the LSSN Mini Summit: Vulvovaginal Conditions? It’s our 3-day, 100% virtual event presented by medical experts on rarely discussed conditions, such as lichen sclerosus.

    You may be saying, I already have LS. Why do I need to know about other conditions? Or I don’t want to know about anything else.

    But the thing is, this is VERY important to your LS journey!

    In this episode, I will explain why you do not want to miss this summit, especially if you already have a vulvovaginal condition.

    We’re going to talk about:

    🪷 Misdiagnosis
    🪷 Secondary conditions
    🪷 Proper treatment
    🪷 Empowerment and self-advocacy
    🪷 Having a medical resource you can trust at your fingertips
    Want to learn more about the summit? Head to https://lssupportnetwork.org/minisummit2023 for more information and details. Get your All-Access Pass before September 19, 2023, and get access to (W)holistic Healing Summit 2022 and 2023 replays until November 1, 2023. You do not want to miss this.
    Other links from the episode:
    Virtual Meetups
    https://lssupportnetwork.org/connect
    Provider Directory
    https://lssupportnetwork.org/providers
    LSSN Membership
    https://lssupportnetwork.org/membership
     

    • 29 min
    Find Your Power Through Pelvic Health with Wellness.By.Penny

    Find Your Power Through Pelvic Health with Wellness.By.Penny

    In this episode, you will be able to:

    Explore the impact of holistic methods on pelvic health and wellness.
    Harness the strength of your pelvic area to alleviate pain.
    Foster a nurturing environment for individuals coping with pelvic pain.
    Unlock a fulfilling life through empowerment for those with chronic conditions.

    My special guest is Penny Petersson

    Penny reaches her audience through her Instagram account, @wellbeingbypenny, where she spreads positivity and humor, despite her own pelvic health challenges. Her unique way of turning the difficult into digestible content has made her a true inspiration in the pelvic pain community.
    Penny's Resources:
    Follow her on Instagram at https://www.instagram.com/wellbeing.by.penny
    Listen to Penny's new podcast The Pelvic Power Podcast.
    Join her membership the Pelvic Health Yoga Membership today, at https://well-being-by-penny-s-school.teachable.com/?affcode=848302_qg_-pve8 and use code 'JACLYN' for a 7-day free trial and 30% off your first month. 
    Connect with us:
    Instagram: https://www.instagram.com/lichensclerosussupportnetwork/
    YouTube: https://www.youtube.com/channel/@lichensclerosussupportnetwork
    Facebook: https://www.facebook.com/lichensclerosussupportnetwork
    Website: https://lssupportnetwork.org/

    • 24 min
    The Challenges of Research with Sophie Rees

    The Challenges of Research with Sophie Rees

    In this podcast, Sophie Reese, an English researcher, discusses her work on the project Living with Vulva LS, a Mixed Method Study. She mentions the development of a checklist of diagnostic criteria to help health professionals diagnose LS accurately and quickly. Sophie highlights the challenges in recruiting participants for research studies, particularly ethical issues, and the responsibility of researchers to publish their findings to create real-world changes. The interviewee emphasizes the need for inclusivity in medical research, communicating with different groups, and improving research involvement among patients. She invites patients to reach out to providers or patient groups to learn about research opportunities and get involved in research organizations.
    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.
    Connect with Sophie Rees on Instagram at https://www.instagram.com/vulva_resea...
    Core outcome domains for lichen sclerosus: a CORALS initiative consensus statement (https://academic.oup.com/bjd/article/...)
    Connect with us:
    Instagram: https://www.instagram.com/lichenscler...
    YouTube: https://www.youtube.com/channel/@lich...
    Website: https://lssupportnetwork.org/
    Loved this episode? Make sure to subscribe.

    • 1 hr 3 min
    Listen to This If You're Looking For Evidence-based Information and Community

    Listen to This If You're Looking For Evidence-based Information and Community

    When I started the podcast, I never imagined it would grow into something so much more - the Lichen Sclerosus Support Network and their annual (W)holistic Healing Summit. Now, every year, we strive to make a brighter tomorrow for those facing the same struggle I once did. But what does the future hold for this amazing network?
    Learn more and get your pass today at https://whhs.lssupportnetwork.org/
    In this episode, you will be able to:
    Experience the transformational effects of holistic healing on lichen sclerosus patients at the inspiring summit.
    Dive into the world of comprehensive resources to fill the information gap and learn more.
    Elevate your network by participating in interactive sessions and listening to expert talks within the community.
    Unfold necessary discussions on sexual health, pregnancy, and menopause related to lichen sclerosus.
    Choose from free, basic, or all-access passes to get different perk levels
    “It's important that you guys get that information in a way that you can understand.”
    The resources mentioned in this episode are:
    Sign up for the (W)holistic Healing Summit starting on May 8th by visiting whsupportnetwork.org or clicking the link in the description.
    Choose a pass option: Free Pass (access to live sessions), Basic Pass ($25, access to recordings for 30 days), or All Access Pass ($100, lifetime access to keyword searchable recordings, PDFs, notes, worksheets, and exclusive sessions).
    Attend the live sessions, including internship as a vulvar specialist with Dr. Jill Krapf, pain management with Dr. Corey Babb, pelvic health physical therapy, sex education, pleasure practices, and talks on pregnancy and menopause.
    After each session, participate in community lounge rooms to connect with others and share experiences.
    Visit the exhibitors to learn about products and resources to help with lichen sclerosus.
    Upgrade your pass anytime if you want more access to the event content.
    Leave any questions in the comments section of the video for further clarification.
    The key moments in this episode are:
    00:00:00 - Introduction,

    00:02:14 - The Holistic Healing Summit,

    00:06:21 - Expert Speakers,

    00:08:32 - Passes and Benefits,

    00:10:24 - Conclusion,
    Learn more and get your pass today at https://whhs.lssupportnetwork.org/
    Connect with us:
    Instagram: https://www.instagram.com/lichensclerosussupportnetwork/
    YouTube: https://www.youtube.com/channel/@lichensclerosussupportnetwork
    Facebook: https://www.facebook.com/lichensclerosussupportnetwork
    Website: https://lssupportnetwork.org/
    Loved this episode? Hit the like button and make sure to subscribe.

    • 11 min

Customer Reviews

4.9 out of 5
53 Ratings

53 Ratings

Deirdre Tshien ,

Great podcast!

Kathy's exploration of Lichen Sclerosus from various perspectives, coupled with her candid sharing of personal struggles, creates an informative and relatable podcast that sheds light on a little-known disorder, fostering a sense of community and encouraging positive change. From Deirdre

savyladytoday ,

Newly diagnosed

This is what I needed. Thank you for providing continuous education. I had never heard of LS and I am terrified let alone in pain as I write this.

Teri mousse ,

Kathy LS

So helpful, thank you! Now I know I need help!

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