Welcome!
Lichen Sclerosus Resources and Support is a small gathering of people who have or are interested in helping those with Lichen Sclerosus. We are not here just to provide information, but to gather information, to collaborate for solutions, to share and discuss all we know, and most of all, to support each other. We aren't trying to 'fix' you and send you on your way, we don't claim to have the answers. We're here to be an ongoing community of Lichen Sclerosus support. Feel free to join our circle of support and understanding, to contribute to our efforts, or just be a silent observer (although we'd love to hear from you!). All are invited to share in the conversation, whether you have Lichen Sclerosus yourself or you are the partner, child, parent, or friend of someone suffering from LS.
What is Lichen Sclerosus?
I'm neither a doctor nor a scientist, so I can't give a strict definition of LS. However, I can tell you that LS is a skin condition that may affect any part of the body, but often affects the female genital areas. It causes many painful, irritating, and life-altering symptoms. It is a real, serious condition that can completely change a person's life. I won't say anymore than this because I'm not qualified and I don't want to ostracize any of us. We all experience LS differently.
If you would like to know more, the following official government website has more detailed information:
http://rarediseases.info.nih.gov/GARD/Condition/6905/QnA/25192/Lichen_sclerosis.aspx
If you would like to know more, the following official government website has more detailed information:
http://rarediseases.info.nih.gov/GARD/Condition/6905/QnA/25192/Lichen_sclerosis.aspx
What is Lichen Sclerosus Resources and Support?
LSRS, or Lichen Sclerosus Resources and Support, is a community of Lichen Sclerosus sufferers who want to support each other. It is also meant to provide you with resources to help make your life with Lichen Sclerosus easier. We offer three main things here at LSRS:
Community Support
We have a Lichen Sclerosus support forum and a Lichen Sclerosus support chat room. The forum requires registration for privacy reasons. It's a great place to talk about life with Lichen Sclerosus, share recipes or art, and just be part of the community. The chat room isn't extremely active, but we do try to pop in from time to time. Feel free to use it, but remember basic chat room safety guidelines.
Resources
We also offer a number of resources. The biggest one, and the one that inspired me to create this site, is the Lichen Sclerosus symptom tracking database. This is a tool you can use (in various file formats) to track your symptoms. It's always under construction, but I hope you'll check it out and use it. It's completely free. I made it for myself and I wanted to share it with others who suffer from Lichen Sclerosus as well. Other resources are upcoming, including a symptom tracking journal and a doctor database. I also try to gather clothing ideas that are gentle on Lichen Sclerosus on our Lichen Sclerosus fashion ideas page.
Research
Finally, the research is the whole reason I decided to create this website. I hope you'll check it out and consider joining us in our effort to bring light and awareness to the Lichen Sclerosus cause. You can read the details on our Lichen Sclerosus Research page.
Community Support
We have a Lichen Sclerosus support forum and a Lichen Sclerosus support chat room. The forum requires registration for privacy reasons. It's a great place to talk about life with Lichen Sclerosus, share recipes or art, and just be part of the community. The chat room isn't extremely active, but we do try to pop in from time to time. Feel free to use it, but remember basic chat room safety guidelines.
Resources
We also offer a number of resources. The biggest one, and the one that inspired me to create this site, is the Lichen Sclerosus symptom tracking database. This is a tool you can use (in various file formats) to track your symptoms. It's always under construction, but I hope you'll check it out and use it. It's completely free. I made it for myself and I wanted to share it with others who suffer from Lichen Sclerosus as well. Other resources are upcoming, including a symptom tracking journal and a doctor database. I also try to gather clothing ideas that are gentle on Lichen Sclerosus on our Lichen Sclerosus fashion ideas page.
Research
Finally, the research is the whole reason I decided to create this website. I hope you'll check it out and consider joining us in our effort to bring light and awareness to the Lichen Sclerosus cause. You can read the details on our Lichen Sclerosus Research page.
About the Founder and Site
I am a woman who was diagnosed with LS almost three years ago. I had been suffering from the condition long before I was diagnosed. I was lucky enough to have a quick diagnosis, although I was basically given some cream and sent on my way after that. Over time the symptoms have gotten worse, and with the chronic pain comes depression. I sought out some sort of forum or support site that might let me vent my feelings and hear the stories of others. I wasn't able to find anything. In fact, the more I searched, the more discouraged and alone I felt.
I finally found a website called Experience Project where there was an "experience" called "I Have Vulvar Lichen Sclerosus." I joined, although my LS isn't only vulvar. Here I found many people like me, experiencing the same and worse things than I had experienced. What a relief and wonderful thing it was to be in the presence of others like me! Yet Experience Project wasn't enough, it wasn't dedicated to Lichen Sclerosus. It was more of a social networking site for anyone interested in anything, and the LS "experience" was just the tiniest fraction. As more and more people joined the "experience" of LS, I knew that LS deserved its own place. So many other conditions have such a thing, but LS has nothing. This is why I created LSR&S, to be comforting, encouraging, and supportive to everyone who has Lichen Sclerosus. To maybe give some answers, share experiences, and to always be there when you are at your lowest. I can't wait to get to know each and every one of you!
I finally found a website called Experience Project where there was an "experience" called "I Have Vulvar Lichen Sclerosus." I joined, although my LS isn't only vulvar. Here I found many people like me, experiencing the same and worse things than I had experienced. What a relief and wonderful thing it was to be in the presence of others like me! Yet Experience Project wasn't enough, it wasn't dedicated to Lichen Sclerosus. It was more of a social networking site for anyone interested in anything, and the LS "experience" was just the tiniest fraction. As more and more people joined the "experience" of LS, I knew that LS deserved its own place. So many other conditions have such a thing, but LS has nothing. This is why I created LSR&S, to be comforting, encouraging, and supportive to everyone who has Lichen Sclerosus. To maybe give some answers, share experiences, and to always be there when you are at your lowest. I can't wait to get to know each and every one of you!
The LSRS Creed
There are just 3 rules for interacting with your fellow LSers. They are:
1. Never criticize or say mean or judgmental things to others for the way they handle their Lichen Sclerosus.
2. Never suggest treatments that are widely known to be hoaxes. Words like "cure all" or "miracle treatment" should tip you off.
3. Never discourage someone from going to their doctor or following their doctor's recommendations and never encourage them to disregard their doctor or stop going to a doctor altogether.
1. Never criticize or say mean or judgmental things to others for the way they handle their Lichen Sclerosus.
2. Never suggest treatments that are widely known to be hoaxes. Words like "cure all" or "miracle treatment" should tip you off.
3. Never discourage someone from going to their doctor or following their doctor's recommendations and never encourage them to disregard their doctor or stop going to a doctor altogether.
