Leia Mitchell and I are back with the second part of our conversation. This week we discuss clinical trial research around Lichen Sclerosus. Leia tells us where the research is on LS mental health as well as where she sees future research heading. We look at what makes a good trial and the risk we need to think about when looking to participate in a trial. So if you're interested in where the science is going definitely check this episode out. Also, check out our new Facebook page for the Lichen...
Jul 10, 2020•29 min•Season 1Ep. 15
Hey. It's been a tough time lately and I can't be of service to you the way I want to so I will be taking some time off. I hope to be back reinvigorated. If you would like to keep in touch you can follow me on Instagram @lichensclerosuspodcast, email me at lichensclerosuspodcast@gmail.com, or join the Lichen Sclerosus Support Network where I will be the most active at https://members.lssupport.net . I'm also going to dip my toe in Tik Tok so you can follow me at @lichen_sclerosus_podcast. Stay s...
Jun 12, 2020•7 min•Season 1Ep. 14
This is the hardest episode I have ever recorded. It's raw and barely edited. It is needed. Please please please listen to this message. It is so important. After you listen tell me does using your voice really work? kathy@lichensclerosuspodcast.com lichensclerosuspodcast.com/blm
Jun 04, 2020•42 min•Season 1Ep. 13
Ever wonder what's going on with Lichen Sclerosus today? With all the different perspectives and voices what does the science say? I speak with Leia Mitchell a clinical research coordinator, medical scribe, and clinical assistant working with some of the top names in the Lichen Sclerosus medical field. She lays out the findings of a recent clinical review, Vulvar Lichen Sclerosus: Current Perspectives . We discuss what the science says about what causes LS, how it presents, and the different way...
May 29, 2020•36 min•Season 1Ep. 12
I recorded this on World Voice Day. I decided to use my voice to tell you my mission and hope you join me. Please listen all the way through because this is a very important message. I hope you join the fight and help me change the future of Lichen Sclerosus. You are not alone! The sooner we join together, the sooner we make a change. Thank you. Don't forget to follow Clare. https://www.instagram.com/vulvalcancerukawareness/ And to find out more about my upcoming project, sign up here: https://l...
Apr 17, 2020•22 min•Season 1Ep. 9
What would you do if your topical corticosteroid stopped working? I mean think about. Remember how it felt when you first noticed something was off with your vulva. The uncertainty that crossed your mind. Was this all in your head? How it felt every time you went to the doctor and they gave you a new diagnosis but the medications they gave didn’t work. The frustration and fear that you would never truly know. What about the day you were finally told you had Lichen Sclerosus? The feeling of devas...
Apr 11, 2020•18 min•Season 1Ep. 8
Just a quick warning, I will be talking about sexual things. If you are sensitive to that I completely understand but this may not be the blog for you. For complete show notes and links to resources visit the website. https://lssupportnetwork.org/how-to-have-better-sex-even-though-you-have-lichen-sclerosus/ Join our free international virtual meetups at https://lssupportnetwork.org/connect...
Apr 04, 2020•34 min•Season 1Ep. 7
Covid-19 aka coronavirus has turned our world upside down. So I went searching to see what people in the online communities were saying about it. Some had questions and concerns about our risk as Lichen Sclerosus patients. They asked questions like, does LS or our treatment make us susceptible to Covid-19? What makes you high risk? What’s the difference between autoimmune and immunosuppressive? So, I went researching, reached out to some doctors, and this is what I found. What About Lichen Scler...
Mar 24, 2020•10 min•Season 1Ep. 6
Does stress cause Lichen Sclerosus flareups? The effects of stress on LS have not been researched. However, my personal experience is that they are connected. Other women in public forums have also associated their Lichen Sclerosus flareups with their level of stress. In today’s hectic and scary environment it is important that we manage our stress and minimize our flareups. The changes implemented to contain the coronavirus are affecting a lot of us. Children are out of school. There is a short...
Mar 16, 2020•29 min•Season 1Ep. 5
Lichen Sclerosus affects everyone differently. Each person can have a different variety of symptoms or no symptoms at all. This week I tell you about the common, severe and secondary symptoms I learned about in my research. I also discuss how some of them have affected me. Common Symptoms: Itching (mostly at night) Burning and soreness Fissures, nonhealing legions, and blood blisters Excessive sweating between your legs Chronic urinary tract or yeast infections Severe Symptoms: The fusing of the...
Mar 08, 2020•18 min•Season 1Ep. 4
Lichen Sclerosus is often misdiagnosed many times before it is finally correctly diagnosed and treated. This can lead to frustration, disappointment, and worsening symptoms. Unfortunately, this is what happened to Clare Baumhauer. After forty years of suffering, she was told she had developed vulval cancer due to Lichen Sclerosus. My story had many of Clare's twists and turns but fortunately, was caught early. Share your story and help grow our community so we can help each other survive this aw...
Feb 28, 2020•29 min•Season 1Ep. 3
February is Vulval Health Awareness Month, Vulvuary! In celebration, I give you some stats and introduce you to the Association for Lichen Sclerosus and Vulval Health (ALSVH). We take a look at the Lichen Sclerosus Manifesto as I interject many times (I'm sorry. I can't help it!) http://lichensclerosus.org/wp-content/uploads/2011/02/LICHEN-SCLEROSUS-MANIFESTO-PDF.pdf
Feb 21, 2020•19 min•Season 1Ep. 2
Hi! My name is Kathy. I have been diagnosed with Lichen Sclerosus for two years but suffering much longer. I have minimal knowledge of the disease and I was okay with that. That was until about two weeks ago when I had the worst outbreak since I started my medication. I had no one to talk to or ask questions. I decided to find my community and learn as much as I could about this illness. So this is a journal of my learning about and living with Lichen Sclerosus. Please join the community and let...
Feb 10, 2020•12 min•Season 1Ep. 1
