Kathy, Author at Lichen Sclerosus Support Network

LSSN Mini Summit on Vulvovaginal Conditions

Sep

LSSN Mini Summit on Vulvovaginal Conditions

https://www.youtube.com/watch?v=lLPT8xf6F7U As we all know, education is foundational to health. If we don’t know about our bodies and vulvovaginal conditions, it’s difficult to take care of them. LSSN exists to empower people with LS through evidence-based information and support. And this year, we’re bringing you even more opportunities to access information and experts in the field. For the first time, LSSN is hosting a mini-summit! The LSSN Mini Summit: Vulvovaginal Conditions is a 3-day virtual event that will provide you with the information and support you need to take control of your vulvar health. It will take place Friday, September 29, through Sunday, October 1, 2023. You'll learn from leading experts about vulvovaginal conditions rarely discussed, including Lichen Sclerosus. Other conditions include: Hidradenitis Suppurativa Persistent Pelvic Nerve Pain Persistent Genital Arousal Disorder Genitourinary Syndrome of Menopause Lichen Simplex Chronicus Overactive Pelvic Floor Muscles. You'll also be able to connect with…

A Look at Acceptance and Resilience. What Does It Mean?

Aug

By Kathy

Kathy Blog

A Look at Acceptance and Resilience. What Does It Mean?

Listen to the podcast here: Introduction And Excited Announcements Hey, and welcome! I’m so glad you are here to join a round table discussion about the concepts of acceptance and resilience we had live with some members of the LSSN membership. The concepts of acceptance and resilience are critical to living with a condition such as Lichen Sclerosus. In this discussion, I asked our participants a series of questions relating to these concepts and Lichen Sclerosus. If you want to join future discussions? Click the button below. Sign Up What is your definition of acceptance and resilience? What do those words mean to you, specifically concerning your Lichen Sclerosus? Jen: I think of the concept of acceptance as being able to admit that you have a condition/disease without simultaneously giving up/throwing in the towel. Acceptance for me means my Lichen Sclerosus is a part of me, but it is not…

Pelvic Floor Physical Therapy for Those with Lichen Sclerosus

Aug

By Kathy

Kathy Blog

Pelvic Floor Physical Therapy for Those with Lichen Sclerosus

The muscles at the base of your pelvic floor are like any other muscle in your body. They can weaken, hold tension and affect how your body works. Pelvic floor physical therapy can help those with Lichen Sclerosus keep their pelvic floor muscles healthy. That’s where experts like Ashley Stump, PFPT, come in. As a pelvic floor physical therapist, she helps people with various problems, including painful sex, urinary and bowel issues, pelvic pain, and pain from LS. I spoke with Ashley to learn more about what she does as pelvic floor PT and how it benefits those with LS. How does Lichen Sclerosus affect your pelvic floor muscles? If you have LS, you already know the condition affects various parts of your life. It also involves multiple parts of your body, including your pelvic floor. Just like people can hold tension in their neck muscles, they can also have…

Aug

By Kathy

Uncategorized

Elevate the Voices of People with LS Through Global Research

To participate in this important research, Global Research on the Impact of Dermatological Diseases, please follow this link: https://globalskin.org/GRIDDStudy Stakeholder toolkit: https://globalskin.org/component/cont... A huge thank you and shoutout to the incredible work done by GlobalSkin for their initiatives to help create a better world for folks with dermatological conditions. Learn all about the Global Research on the Impact of Dermatological Diseases below https://youtu.be/hY3McSD6Zfg In today's video, I am sharing a very important survey for lichen sclerosus and dermatology conditions. It is free, takes about 20 minutes to fill out, and is available in 17 different languages. 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). What is the GRIDD study? The Global Research on the Impact of Dermatological Diseases (GRIDD) project aims…

What’s the best lube for Lichen Sclerosus?

Jul

By Kathy

Kathy Blog

What’s the best lube for Lichen Sclerosus?

https://youtu.be/P9edyDq6Ue0 Have you ever wondered what lube is best for Lichen Sclerosus? Perhaps you felt overwhelmed by the massive selection of lube options online and had no clue what to buy? Have you ever wondered what you should look for and avoid in a lube? If yes, this is the episode for you! Today I am here with my amazing friend and fellow LS warrior, Jaclyn, from The Lost Labia Chronicles, and we are going to be talking about lubrication, artificial lubrication, that is. But before we jump into this, click here to subscribe to The Lost Labia Chronicles, which dives into sex, mental health, and Lichen Sclerosus. I am so happy to be here with my girl to talk with y’all about lube (what kind of lube is right for you, Jaclyn’s experience with dilators and lube, what you want to consider in choosing a lube, etc.). Types of…

Discussing The Mona Lisa Double-Blind Study with Leia Mitchell

Jul

By Kathy

Kathy Video

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…

Take Part In The Revolutionary GRIDD Study Today

Jun

By Kathy

Kathy Blog

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…

Unfiltered and Bold: Real Talk on Pelvic Health with Penny Petersson

Jun

By Kathy

Kathy Video

Unfiltered and Bold: Real Talk on Pelvic Health with Penny Petersson

Does the constant discomfort in your pelvic area sound familiar? Have you tried medication or invasive procedures with little to no relief? It's time to take control of your pelvic wellness with holistic approaches that celebrate the power of your body. Join us to discover how embracing your pelvic area can alleviate pain and create a supportive community for those dealing with similar issues. Don't let chronic conditions hold you back any longer - it's time to unlock your potential for a fulfilling life. Empower yourself and join us for a journey towards pelvic health and wellness. The body is so fucking amazing. Penny Petersson Pelvic Yoga Coach My special guest is Penny Petersson You can catch a glimpse of Penny's infectious spirit on her Instagram page, @wellbeingbypenny, where she makes us smile by calling out the struggles of living with LS and pelvic health issues. This is Penny Petersson's…

LS Zine Giving Voice to Patients Around the World

Jun

By Kathy

Kathy Blog

LS Zine Giving Voice to Patients Around the World

By Gina At this year’s (W)holistic Healing Summit, the Lichen Sclerosus Support Network released its first LS Zine! The zine gives voice to LS patients through art, poetry, interviews, and storytelling. It’s a creative, intimate look at Lichen Sclerosus through the eyes of people who live with it every day. I am honored to be one of the individuals featured in the LS Zine. Contributing two poems and being interviewed by a member of the project team reminded me of the importance of art and storytelling as a part of healing. The Importance of Sharing Our LS Stories Since being diagnosed in 2020 with Lichen Sclerosus, I’ve struggled with being able to put my experience into words. Because LS isn’t widely known, I’ve spent a lot of time researching it and explaining it. I’ve read medical articles, listened to webinars, and tracked symptoms. I’ve shared the information I’ve learned with…

Discussing The Challenges of Lichen Sclerosus Research with Sophie Rees

Jun

By Kathy

Kathy Video

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…