Lichen Sclerosus Support Network

I have had the pleasure of being a volunteer for LSSN for few years helping with social media. Kathy and the team passion and drive is just completely contagious. They are so knowledgeable and caring, and they are truly making a difference,/impact in the womens health space. I am honored to be able to be part of such an incredible movement!

The Lichen Sclerosus Support Network gets 10 starts on a rating scale of 1 to 5 in their work to provide amazing support and cutting edge knowledge on this condition. I am a retired RN who spent years providing education to patients and families and now I am on the receiving end of education and support and it couldn’t be better. When I received the diagnosis of LS from a provider who told me “what I had”, handed me a prescription, told me to come back in 3 months and walked out the door, I was overwhelmed in so many ways. Thanks to the LS Support Network I am now overwhelmed by the cutting edge knowledge they provide and the knowledge that I am not alone on this unplanned journey. If you are given a diagnosis of LS you are not alone after opening the door to this amazing support resource.

When I was diagnosed with LS it was devastating. I had never even heard off it. I have listened to podcasts and the Lost Chronicles lady and have learned so much that I was not aware of. Thank you!!

I'm 61 yr young ,married 36 yrs.suffered with LS 3ys before diagnosed 6mo ago .2 cystos in-between,hematuria utis,painful intercourse seen an obgyn 3+ yrs & never helped or diagnosed me .Then found a new obgyn & was given diagnosis....depressed & Thankfully diagnosed. It's depressing it was like I looked down & 1 day everything dissappeared. Im petrified. I'm thankful for my gyno but feel he should be helping more.Now have a flare up & gyno said stop all only use clobetasol.I feel I should be using it at least 2xs wk as deterent also premarin 3xs wk & via or reveree x4 days.I feel I should be on a regimen but don't know, never ever did I hear of this.He tells me now LS moving towards rectum.TY much for your support.

When I was first diagnosed the LS I felt scared and alone. Came home and started to research and LSSN became the first place to become a gentle landing spot. They normalized everything and gave me clear steps of what to do next. I truly felt supported by Kathy and Jacklyn! They are doing amazing life changing work! I am happy to support them and feel LSSN is very worthy of every donation made to this organization to continue to help woman with LS!

The lichen sclerosis network has been a lifesaver for me. They have literally made my quality of life better. I had been to multiple doctors who gave me little to no information about this disease and absolutely no hope. Kathy and Jacqueline taught me everything I needed to know about managing this disease. I will be forever grateful to them.

Living with lichen sclerosus (LS) is isolating and confusing. I didn't understand the condition, and I struggled to find reliable information.

LSSN were a game-changer. Their emails are a great source of comfort and information. I learned about symptoms, treatment options, and how to manage the condition effectively.

Hearing about the experiences of others who understand the challenges of LS has been incredibly comforting and empowering. They helped me feel less alone and more in control of my health. I'm incredibly grateful for their vital work in raising awareness and supporting people living with LS.

I found out about the LSSN when i had just gotten diagnosed with LS and was told exactly nothing about the disease or the ways to treat it by my doctor. This, unsurprisingly, left me in extreme emotional distress. I had to go to the internet, google the abbrevation and learn for myself. Thank god, I quickly found the LSSN. Through their content, especially the educational podcast and the virtual international support meetups I was able to learn about the condition and the fundamentals on how to treat it and how to alleviate the symptoms during my daily life. It has been a few years since my diagnosis now, and of course, since it is a chronic disease, I still struggle with it. But it is safe to say, that without the information and emotional support network of the LSSN, my life would in no way be the same as it is today. Information is power, and these people behind LSSN always work for accessible information with a science based wholistic approach. In a way they saved me.

Lichen sclerosis is a scary disease without any cure and no clear-cut treatment. It damages the most intimate parts of my body and causes fear, stress, pain, anguish and isolation. After I was finally diagnosed and had a name for this condition, I found the LSSN and a wealth of information and support. The LSSN resources, support groups, meetings and advocacy work have given me hope, a precious thing. With the help of LSSN, I can manage this condition and not let it take over my entire life. I am grateful for the compassionate and knowledgeable leaders here who help other women like me, who fight for us and inspire us to keep on loving our bodies.

I have L.S. on my vulva and perineum. It’s not a condition, considering where I have it, that I feel comfortable talking about with friends or relatives. No one can understand the discomfort I experience, except a fellow sufferer. I was so happy to find the L.S. Support Network! Anytime I had a question it was answered very quickly. They care! The videos gave me loads of information and suggestions. I am very grateful for their help and extensive knowledge. They know more than the many doctors I went to for a diagnosis and treatment ! Thank you for your remarkable and much needed support!
Judy B

Finding LSSN was the biggest relief and most helpful source of information since I suspected I had LSV. First, it tremendously helped me to get informed about the disease and communicate appropriately ny symptoms and worries to the doctors, as well as to understand critically what doctors told me. Thanks to LSSN I could even identified that the treatment I had been prescribed was not correct and I could ask for help to another doctor. After my diagnosis, I found valuable support from other women with this disease and share my worries. I am tremendously thankful for this initiative that is helping to visualize this disease which is so stigmatized

When I was diagnosed with Lichen Sclerosis in 2022, the Doctor basically told me it's name shows me what it looked like,gave me an Rx for clobetasol and sent me on my way.
It was searching for more information about the condition that I found the Lichen Sclerosis Support Network. I emailed Kathy and she not only got right back to me, she called me and spoke to all my concerns and some I hadn't even had yet.
I have attended many phone meetings with both Kathy and Jacqueline.These meetings have been a literal lifesaver for me. Between all the knowledge I've gotten from the meetings to hearing others stories,I felt less scared and alone. Especially when I do have flare ups.
I am also grateful for the podcasts and videos on all the information about LS and it's effects (both mental and physical)
I have noticed on some social media platforms that LSSN is often mentioned when people are asking about the condition. It really is the Gold Star network for all things LS. I'm very grateful to have discovered it at beginning of my diagnosis.

I am so great full for this organization and all of the resources they provide. I was diagnosed about three months ago and found this safe place, LS can be a very lonely place as most people know nothing about it, and don’t want to talk about it. The resources are amazing, access to professionals and their blogs is very helpful and comforting. Thank you for all you do, like the week long healing summit this past May, it was amazing!

LSSN (Lichen Sclerosis Support Network) is an amazing organization helping women who feel like victims suffering with LS to feel like warriors. Women in this organization are being given the tools necessary to help minimize their symptoms to feel like they are going to war ... and winning their fight against LS. The support given from Kathy Ruiz, many qualified specialists and fellow warriors - have given me hope for my despair. I have learned so much from the YouTube videos that are posted, zoom meetings with other warriors and experts in the field Hats off to LSSN! Kimberly, Memphis

After a year of doctors scratching their heads (at best) or completely gaslighting me in really terrible ways, I was able to figure out what was going on with my body by stumbling upon your website when I was desperately googling my symptoms. Suddenly there was a list of all of my exact symptoms right in front of me! And a label for what I was experiencing. Even all of the medical websites like webMD and Mayo Clinic, don't have as good of info as you do! I would've never figured it out by looking at those websites

And because of the list of providers you have on the website, I was able to finally find an amazing doctor, who not only listened, but was able to give me a diagnosis and treatment plan. And in one of your videos, I now know that there is a non-surgical approach available for clitoral phimosis. I just really can't thank you enough. I can't imagine where I'd be without all of the information you've provided.

I am in the beginning stages of learning about LS. I was diagnosed just a few months ago. I looked everywhere for information and finally found Jaclyn on TikTok, then the LS support network. Amazing amount of information…all researched. I would have been totally lost without LSSN. I will definitely be participating more and learning much more.
I am forever grateful to Kathy and Jaclyn for their fabulous contributions to those of us with LS. The videos are super helpful and provide a lot information and support. I am only just starting to go to the Saturday meetings and am in awe of all I am learning. Knowledge is power. There is so much hope for managing LS, and leaving a high quality life as long as groups like LSSN exist.

Jacklyn and Kathy,

I'd like to start by saying how much your work has helped me through my experience of living with LS. When I was diagnosed in 2012, I really struggled to find information. I felt alone, ashamed and scared. I then went through different stages, but I have to say that discovering your network has enabled me to take an important step out of the feeling of loneliness and isolation. It made me realize just how much I'd suffered on my own, and what a difference it makes not to feel so alone anymore. Thank you for making valuable information available to all women. Your work helps us to better understand what is happening to us and to take back our power over our lives. It's hard to get access to specialists who know about this disease, and thanks to you, we finally have access to quality information.

LSSN is an invaluable online resource. And I attended the live zoom session yesterday and came away feeling much better about all sorts of things connected to having LS. Kathy was a wonderful, reassuring presence, not at all didactic yet kindly informative, and attentive to all. It was great just to be in a session with a group of people who share the same under-researched and little-known disease, too. The LSSN provides a necessary function to so many.

I have recently been diagnosed with LS, and had to deal with a great confusion and - let's admit it - fear.
LSSN has been extremely helpful in providing evidence-based information about different aspects and problems we patients have to face. I am so grateful to all the people who built this incredible support network!

As a gynecologist who treats patients with LS, I LOVE the evidence-based resources that LSSN provides plus the community support.

I would like to appreciate what LSSN are doing! After 23 years of LS disorder I found the necessary support given by LS Support Network. I was confused and I stopped to treatment, because of lack of hope ect. Thanks to articles and videos at LSSN websites I am back to active treatment. They gave me so many new informations and logical understanding for this subject! Now I also know that I am not lonely with this. Kathy, Jaclyn and their team help not only in US but they help women from all over the world!

Kathy, Jaclyn and their team are truly AMAZING and have given me a safe, welcoming space to understand and cope with my diagnosis.

After being misdiagnosed for 10+ years, numerous doctor visits and a whole lot of frustration, I was almost ready to call it quits when I met with a new Dr. who recommended a biopsy and diagnosed me with LS. While I was eternally grateful to put a name to my condition, shortly after I began to feel the heaviness of being diagnosed with a chronic disorder. I was lonely, confused and scared and thanks to LSSN, I have found a community that has helped guide me through my ongoing journey. THANK YOU for all you do to educate and empower those with LS.

It took me 58 years to get to a Lichen Sclerosus diagnosis! Confusion, anxiety, loneliness — the medical community has failed so many of us with this condition. Jaclyn, Kathy and LSSN are guiding the way, sharing much needed research based information, connecting us with knowledgeable and varied medical communities and providing so much support for the many complex and emotional aspects of this disease. LSSN provides a space for meaningful and supportive discussions on how we can live our best lives with LS.

Having been diagnosed in 2018, finding no official US support group at that time, I’m just so excited to discover LSSN now. Our medical providers just do not have the time, knowledge or ability to keep up with current LS information and this nonprofit creates a needed forum for patients and providers. Without feedback to the medical community from folks living with this disease, our providers are not fully able to understand the scope of LS. This organization helps to bridge gaps in our medical system by providing easier access to information that is vital to aiding in early diagnosis and on going disease management — so important to those affected with the condition.

We are just at the tip of the iceberg on what can be accomplished through LSSN. I can not thank Jaclyn and Kathy enough for their exceptional bravery and stellar use of social media to build a resource platform so desperately needed. I fully support LSSN and feel I have a trusted LS partner through this critical nonprofit organization.

LSSN has been my number one go-to for information on this issue. So grateful for the work they are doing. I attended my first support session and it really made a big difference in how I am going to approach my diagnosis and reinstilled my sense of hope that there are people who care and want to help and made me feel less alone.

Although so far I have a mild case so I am not suffering the way many others are, the possibility that my case will take a turn for the worse is always with me. The LSSN Support Network has given me so much information that I feel that I know how to keep tabs on my situation, so my anxiety level has diminished. Because of the support of Kathy and Jaclyn and the other women who share their stories, I now am on a regimen that I believe will protect me from cancer, and architectural changes to my vulva. The intellect and the warmth of the women of the LSSN is magical, so invigorating.

I was recently diagnosed with LS. My doctor prescribed Clobatesol steroid ointment and sent me on my way. I was not improving. Then I discovered the LSSN and found a wealth of information from experts and fellow LS sufferers. I learned the proper way to apply the steroid ointment and started to see immediate improvement. The information and support found on theLSSN is invaluable and it is so encouraging to hear fellow sisters’ stories and know I am not alone on this health journey.

Having been diagnosed with LS and feeling quite hopeless at times, the videos and information provided are invaluable.
It helped me feel not so alone and more able to look after my condition in an educated manner.
From creams to routines to tips and support.
I don’t know how I’d have coped in moments of utter despair without them.

LSSN has been a valuable resource for learning about lichen sclerosus, understanding the most effective treatments, and finding a community of other people with the condition.

I'd just been diagnosed with LS and was desperately seeking information and support. My doctor told me what it was, but then nothing about how to use the steroid cream or anything else on how to live with my condition. So I was still suffering terribly and feeling incredibly alone. Then I found the Lichen Sclerosus Support Network and its helpful videos, blogs and meet ups. Jaclyn and Kathy were there for me when no one else was, and gave me the tools to get myself into remission. They are seriously LS Warriors, fighting to help those with this devastating condition with passion, grace and care.

I struggled for more than 8 years to get a diagnosis and then a treatment plan. It took many doctor visits and many ideas without resolution or help. Through the LSSN I stumbled on a webinar featuring Dr. Jill Krapf and other experts (such as Pelvic Floor PTs). They were speaking to me.! They explained exactly what was happening, gave it a name and gave me a game plan to follow. I would not be in remission without this organization. I thank you from the bottom of my heart. The LSSN is a special supportive community.

I am a 76 yr old lady who was diagnosed 3 yrs ago. I had never heard of L S and come from a generation who never talked about intimate things like LS. I just suffered for years in silence until I got the courage to see a consultant in gynaecology. I was given the diagnosis and cream with follow ups every 6 to 9 months. But I am never asked how I feel etc. I live in England, United Kingdom.
I searched and searched for groups but except for Facebook which I didn’t want to use there was nothing. I was looking for someone who I could talk to and discuss my fears and concerns.

I found the LSSN and joined. This network is invaluable to me and has really helped me to understand LS. The news emails and You Tube videos are great. I no longer feel so alone and Jaclyn and Kathy are so good in understanding and explaining LS. There support should be recognised.
Thank you so much.

The LSSN has been a huge support for me since it was formed. It's more than just info and resources. It's community support, which is so important, particularly with a diagnosis that is so "taboo" that we don't talk about it. (I credit LSSN with empowering me so much that I talk about LS with my friends and even helped a friend get her own diagnosis!) I'm so glad LSSN exists in the world and that people who get diagnosed now will have immediate access to this network, which I didn't have when I first got mine. I had felt so alone and lost and devastated, not knowing what was ahead of me or whether there could be a pain-free future for me. LSSN consistently gives me hope and care. I can't recommend it enough.

I cannot rate LSSN highly enough. I am so grateful I was referred to this group by my dermatologist. The extensive and well-curated information has been invaluable to help with the anxiety of having LS. Kathy and Jaclyn are empathic, knowledgable and careful about the boundaries of their expertise and the time they give supporting us is incredibly generous and so much appreciated. I have a sense of trust in this group that I have not found elsewhere related to this condition. Thank you for being here for us all.

So so helpful and informative, make me feel better about what Im going through and like Im not alone.

The LS support network has been a Godsend for me. I was recently diagnosed & struggling to find information & some hope. Due to the intimate nature of LS I just didn’t feel comfortable discussing my situation with anyone and I was feeling very isolated & alone. The LS support network is a wealth of information and has answered so many of my questions - which have directly led to improvements in my condition. Hearing other women’s stories of remission has eased my mind and given me some peace of mind that I can deal with this disease. I’m very grateful I found this community!

The Lichen Sclerosus Support network has been an extremely valuable support group for me as a LS patient. I have learned so much from their website, YTube videos, podcasts, and LSS Summit Meetings. I have also shared this information with all of my healthcare practitioners so that they maybe come better educated and serve their patients with expert care. Kathy and Jackie are truly the best and II can't thank them enough for all of their support!

Before I was a board member, I was just a patient with LS looking for hope, community, and support. I found that in spades with LSSN and am now proud to continue their growth, alongside an incredible team of volunteers passionate about creating a better world for people with lichen sclerosus.

I'm just beginning my Lichen Sclerosus (LS) journey and the Lichen Sclerosus Suport Network (LSSN) has been awesome! They provide more information and resources than I knew existed. I'm so thankful for Kathy and Jaclyn who teamed up to create the LSSN and opened the doors for all to come and learn about LS and meet others who are living with LS.