BATTLING LINCHEN PLANOPILARIS | INTRODUCTION
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- Опубликовано: 20 янв 2018
- Hi Guys!
Welcome To My Channel...
Linchen Planopilaris is a very difficult thing to go through so I wanted to share my story and journey with you...
Please feel free to share any tip in the comments to help others .
Thanks for watching
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I too have LPP! It started a few years ago but only in small spots but as the years passed by I noticed the crown of my hair thinning and now it’s completely bald. I thank you for sharing your story❤️❤️
Thank you for connecting with me DeShun, I am so sorry to hear about your diagnosis and the progression of it. I have said this so many times that no matter what strength we possess as individuals when we get diagnosed with conditions that has life changing effects it takes a special type of strength to even start processing let alone accepting the changes that comes with it.
How are you now wearing your hair? Have you found a way to disguise the bald patches? One thing I do to get me through is to focus on other things about me that’s beautiful and enhance them, I have since changed my diet, I work out daily. You see I have told myself that if I’m going to be bald then I’m going to be bald and Beautiful. Working on your body can increase your confidence & your mood and overtime you’ll go through most days not thinking or being bothered about your hair loss. It takes time to change your mindset and there will still be down days but they get less overwhelming with time.
Stay in touch please I would love to hear about your coping strategies.❤️🙏🏽☺️
I was diagnosed with the same years ago. Try pure rosemary oil. It is a healer, and it is stronger than minoxidil.
I've been battling with LPP since I was in the fourth grade. I am now 20 years old in college. Growing up I never understood what was going on with my hair, being in class and my whole entire scalp just burns, having scabs on my scalp that I would just pick at yanking my hair out with it. My head being to tender that my mother couldn't even touch it. My hair was 4c so just imagine how my hair would look while I went to school. My dermatologist was at Yale medical and they told my mother I was actually the youngest they have ever seen with LPP, they gave me all types of creams, solutions, and shampoo as well. Having natural hair the products they give actually dries your hair, so it never helped. As I got older, I gave up on going to the dermatologist they were absolutely no help, especially knowing that they were Yale you would think otherwise. I started looking into natural ways to deal with it. I learned that my diet has a huge role and the stuff I use on my hair. I removed sugar from my diet and my scalp changed tremendously. Scabs were going away, my scalp wasn't hurting, even though most of my hair already fell out, some parts that weren't permanently scarred started to grow back. My cousin, she's into the whole natural thing so she told me about using natural oils only, so tea tree, castor oil,peppermint oil, and use Castille soap to wash your hair. These things actually work take turmeric pills it helps with inflammatory. I've battled with this thing for years watching your hair fall out is the absolute worse thing that could ever happen, but I learned that I need to learn my body and become one with it, and to take control. The doctors will give anything that matches the symptom but everybody has there own version of LPP. For you to even put it on RUclips I applaud you and I know one day it will get better and you will feel beautiful again with or without the hair. Your strong and great and I wish you nothing but the best!
Deanna Hi, thank for your contact. It’s such a privilege talking to someone who’s add this condition for as long as you have, thanks for your encouragement and your realistic views on things to use . I’ve also tried several different options but to date nothing has worked and I’m actually just living my life now not worrying too much about my hair. The vain side of me that never believed that I could still look and feel beautiful without my hair is slowly fading away and I’m starting to see past the hair. Training to self love without society’s stigma of a woman’s hair is her beauty is hard but I’m trying. I take no medication and Ive also stopped going to the dermatologist, the frontal area of my hair right into the middle is completely bald and scarred so my disguise will soon have to change, I sometimes wear wigs but they are quite expensive to have made in the U.K.. Thank you so much for sharing your journey with me I appreciate you, and please know you’ve empowered me to continue my path of self love.
Guys i am gonna be honest with you, I have LLP. for me it just takes a steroid injections every month which totally suppress my symptoms. My idea is that people put too much stress on themselves because of this disease which I think might be the reason to elevates LLP symptoms- stay positive and yes guys medical treatment helpful.
Key things I did which my doctor thank me for is that I caught it in early stage, so hopefully no scarring gonna happen as long as I am doing my treatment.
@@mohammedabdullah2587 How early?
@@mohammedabdullah2587 in my case I don’t put too much stress on the situation, I guess it affects people differently like most things. I had gn through a very traumatizing pregnancy which resulted in me giving birth at 29 weeks. My entire focus was on both me and my daughters recovery. Once I was discharged from the ICU my entire days for the next three months was spent back and forth from the the NICU. I had so much going on that I didn’t even notice when my hair started going, I guess I was in a form of a robotic mode. When my condition was finally diagnosed after several visits at my doctors I already had scarring.
I’m happy to hear you received your diagnosis early and that treatment works for you. Your success story I’m sure will encourage others to get an early diagnosis but for those who aren’t fortunate enough to get an early diagnosis and are now suffering the same fate as me I wish you all the very best and I hope my story inspires and encourages you also.☺️
I too received this diagnosis a couple of weeks ago. I keep wavering between feeling devastated and then thinking that it could be worse. Then I think if I research enough, I’ll find a miracle. I’m trying to come to terms with this and it’s not easy.
Hey Angela,
Hope you are well, just checking to see where your heads at with you being diagnosed? How have you been coping? What percentage of hair loss have you got and what are the symptoms you are dealing with? It takes strength and courage to even tell yourself it could be worse because most women have been systematically told that our hair is our beauty, that was my mindset forever. To now be told that I have a condition that could potentially make me go bald was nothing short of devastating😔 it’s been more than 2years now since I’ve been diagnosed and I have since found strategic ways to disguise the areas of loss. Hair does play an integral part on how we feel about ourselves and some of the styles I rock definitely gives me a boost in confidence however I have come to terms with the idea that I’ll eventually shave off everything and I often envision myself rocking by baldness and still being beautiful and sexy. Please do share any secret hacks you’ve strategized. Looking forward to hearing back from you.😊
Sorry. Just saw this. I spend most of my RUclips time watching puppy videos. They make feel good. Haha! I started out with letting a couple of dermatologists give me injections in my head. The second time it appeared that I was getting some fuzz growth but then Covid hit hard and I wasn’t comfortable going to Kaiser. I also realized that I was feeling slight dents in my scalp from the injections which told me that wasn’t a good way to go. I then started spending too much time watching videos and spending money looking for miracles. I have a hard time being consistent so that probably doesn’t help either. I am losing hair in the front and on my sides too but I’ve learned how to wear scarves that camouflage my hair loss. Lately I’ve been more discouraged and just bought a couple of wigs. They are super cute but I guess I’m not desperate enough yet to wear them all the time. I’m rambling. Bottom line is I’m coping. I noticed tenderness on my scalp a couple of weeks ago so I scheduled an appointment with a female dermatologist. Even if she doesn’t have encouraging information for me, I’m hoping she will be more empathetic with my plight instead of matter of fact like the two male doctors I saw were. If there is a silver lining in this at all, I see that I am not alone. 👒
Hi I was diagnosed today with Lichen Planopilaris. I was prescribed pils shampoo and rogaine 5.0... your story inspired me. My doctor did listen to me and answer my questions. I’m dealing with it the best I can. Praying that it can be reversed. You are Beautiful, we are Beautiful. We will get thru this together. I don’t know you, but your video bought me to tears. I love you and will follow your journey
I wanna tell you something, stay away from reading about people who have this condition let me tell you why. I have the same condition but I am looking to recover from it and stay positive about my treatment which seems to be very very effective, on the other hand, internet community looks to deal with problem and have scarring and stop medications- I am sure you don't wanna have scarring so stay on med and I can tell you it works I have been taking for years and I have full head of hair with no scarring.
Mohammed Ali did u lose ur hair and they grow back?
@@mohammedabdullah2587 what type of treatment did you have that’s working for you?
I'm crying too. I was diagnosed a year ago. Thanks for sharing ❤
Hey, thank you for connecting with me. So very sorry to hear about your diagnosis. Yours sound very similar to mine in terms of where you’ve lost hair. The style I wear in my video is the same I wear now and it’s swept to the side to hide the otherwise visible baldness at the front of my head.
I have also accepted it’s not a terminal condition so I have made peace with it and just find other ways to love myself apart from my hair.
LLP is definitely an autoimmune disease and can be connected to other conditions, I for example have a condition with my white blood cells which affects other functions in my body, I’m also severely anemic.
I have a few wigs I wear on occasions but I find it’s so expensive to have them custom made and the ready made ones aren’t always nice. I’ve considered shaving my head completely but I haven’t built up the confidence yet to do it. I’m sure you are beautiful with or without hair and your mindset is on the right path, so with that being said continue to be positive and please share if you find a decent wig at an affordable price. Take care and do please stay in touch.x
Great video- can’t wait for the next one had never heard of this before! Well done for spreading awareness on this issue! Xxx
Aisha Simone Thank you for watching my video, for your feedback and most importantly your encouragement. You’re right it wasn’t easy to put myself out there like that because despite others seeing me as confident I have a many insecurities public speaking being one of them . I will definitely be doing a follow up video so please stay tuned .😘
Your oh so stunning! 😍😍 i know this must have took a lot to come on and talk about it ❤️ well done ! Looking forward to updates 😘
Amera Gentles Thank you so much Amera😘, it was difficult because I’ve always been very guarded about the image I portray to others and for years have worried about how others view me.There is definitely a follow up video which will be more difficult to put out but if by me sharing helps someone else then I’ll continue on this journey.🙏🏽👏🏽😘
I love how you have found the strength to openly tell people about your problem i will always support love you loads
The Lewis-Johnsons, Thank you Romero for your very kind words and your encouragement. ❤️❤️😘
Thanks to everyone who have liked, watch, commented and subscribed to my channel. Your kind words, encouragements and support means the world to me. I am awed by the outpouring of Love I’ve received and look forward in continuing my journey with you all.😘😘🙏🏽❤️❤️. Forever grateful
Mathew 21:22 "and all that you ask in prayer, if you believe, you will receive."
and if faith is weak, then looking away unto Jesus perfects our faith because "He is the author and perfector of our faith" Heb 12:2
Well I too have this condition. It's been an absolute struggle for me lately dealing with this. It's affecting everything in my life especially my relationships. Thank you for sharing. ❤
Relationship!!!....And no it doesn't!!!
So so sorry to hear about your diagnosis, since making the video I’ve not had the courage to do any follow ups simple because I have to be in a good head space mentally to do it so it can inspire and uplift others and I haven’t been. I’m happy you’ve found my page, I’m also on Facebook where I regularly update daily inspirational messages. I’ll talk a little more in-depth with you before the weekend just to hear from you what you’re struggling with the most. Take care and we’ll talk soon.❤️
@@genevalewis5220 I'm not sure how I'll be able to communicate directly with you. Are you able to send me your Facebook information via direct message? I Believe I am also now in the aggressive stage. I feel exactly the way as you describe in your video. It doesn't help that I feel as if no one else can understand since they don't have this. I would absolutely love to chat with you.
TINA XO hey Tina, my email address is glewispat@aol.com let me know if you find me on Facebook if not what’s your Facebook username so I can add you.
Thank you for sharing your story! Your act of bravery is helping so many others.
Hey Joanne, thank you for your message. I’m happy others find my story inspiring, I have wanted to do a follow up for years but haven’t built up the courage to do so. Hope you are doing great.
Thankful for all the wonderful love & support 😘❤️🌹💕🙏🏽🙏🏽🙏🏽
Thank you, this was such an informative video Geneva. Im waiting for the results of the biopsy to confirm diagnosis of LP🙏🏿 Its been a long and confusing Journey for me
@@leonmitchell2542 Hi Leon, thank you for connecting. I will pray it isn’t LP, however if it is you have come to a place where you can feel connected. If you’re feeling down and need to connect with someone who can share there experience, and speak words of encouragement to you.
Please do keep me posted on your results and be sure to ask questions, if I can answer I will most definitely do. I have a group on Facebook as well where myself and others share our journey and experiences.
i feel every emotion on here! thank you for this. I always feel like it happened to me because of something I did, like maybe not eat enough food.. Straighten it.. 😞 my side are gone.. it just keeps getting worse. ☹ you're so brave. thank you.
pookiee I had the very same thoughts when my hair started going, I would beat myself up day In day out always thinking that it was something I did why this happened to me. When I got my diagnosis I was angry, sad and upset but I also felt relieved that it wasn’t anything I had done to cause this condition. My encouragement to you is to focus on all the other things about you that’s beautiful, don’t get me wrong most women were raised with the concept that our hair makes us beautiful and for many many years until my diagnosis that was my belief, but I’ve had to find other areas of my body, features on my face and also had to become very creative with my makeup to take my focus off my hair. You are a beautiful woman and whilst this journey will come with different mixtures of emotions on a daily basis please accept and embrace the notion that your hair doesn’t define who you are. I’m here to uplift on your down days when you need uplifting but through all the different people sharing their experiences with me I also realize I’m not on this journey alone and that also helps me to face each day with less anxiety. Thank you for reaching out and sharing your experience with me.❤️❤️
thank you so much! 💛 😌
Geneva you have natural beauty and look glowing 😍. Well done for having to confidence to share your emotional experience. Stay strong and stunning ❤️❤️😘😘😍😍
Sarah Thomas Thank you Sarah, your words mean a lot. Thanks you for your support, I’m grateful.
🙏🏽😘❤️
Thank you for sharing your story. I struggle with LPP and it is as emotional as it is physical. I pray for a cure and peace for all of us with this vile disorder.
Columbus Mcghee , thank you for watching my video and for also sharing how your diagnosis is affecting you both emotionally and physically. I do also hope they find a cure for this disease if not even for myself but others who are and will be affected by it . Look after yourself and in your darkest moments try and find Beauty within.
@@genevalewis5220 Thank you so much. I revisited your channel this morning because I'm in crisis with LPP right now and slipping into depression. I'm an African American woman and I've tried everything like you. One side of my hair is quickly disappearing. You give me inspiration with your beauty inside and out.
Any advice would be welcomed. BTW, we are connected by our names too. My given first name is Neva
@@columbusmcghee7654 it’s lovely hearing from you again, I know our connection isn’t under the very best of circumstances but hopefully something lovely can come from it.
I am so very sorry to hear that the condition has worsened since our last conversation, unfortunately I am no closer to hearing about a cure for this terrible disease.
With regards to what you can do moving forward you will need to change your mindset and start creating your own happiness with what you’ve got. I’ll ask you a few key questions to help me analyze the best approach in getting you to start falling in love with yourself in a way you didn’t realize you were capable of doing.
1. What do you consider as beautiful?
2. Outside of your hair what other two body features do you love
3. Do you wear extensions and if not do you see yourself as someone who could embrace shaving all your hair off?
Please don’t be alarmed by my questions as I fully understand this situation isn’t the easiest to embrace . Believe me when I say I have seen the worse side of depression from this condition and I had to claw myself out of the pit that I was in. I still have days when I struggle but I’m better these days than I was before. I will send you some photos of styles I have worn since the loss and I am now at a point when I can look in the mirror and see myself as beautiful. Also how are you wearing your hair now? Please stay in touch as I am here to support you.
@@columbusmcghee7654
Let me know what’s the best way to share the photos with you.
@@genevalewis5220 Thank you. Please email or text me: mwilliams@burrell.com or 3124978515. Your hairstyle looks lovely. No one would know your burden.
Hey...
I too have LPP and also Oral LP since 2020... I m so frustrated at first that how my beautiful hairs had gone continuously.. I took medication too but no such results seen. It quiet very difficult to accept it but life is a beautiful journey. So never feel alone many have more miserable conditions and they live in much great difficulties...
❤ From India
My 6 year old son has this he has several patches on his head and scarring he still gets a very dry scalp even though I oil so much. What shampoo or soap can I use?
Thank you for sharing! I just was diagnosed with LPP last month
Sorry to hear about your diagnosis Detrica. How are you coping and what symptoms have you got? I would very much like to hear a bit more about you as I know how much receiving this diagnosis can affect us in a negative way. Rest assured you are not alone so please do share how you are dealing with the news.
I just found out I have LPP last week. The dermatologist started me on steroid injections right away. I'm hoping it will work. Thank you for telling your story.
Hi there,
So very sorry to hear about your diagnosis but I’m happy to hear your dermatologist have started you on treatment immediately. Yes definitely hope this works for you and you won’t suffer much hair loss. Do keep us posted on your journey and the effectiveness of your treatment.👍🏽🙏🏽
@Tiffany Stephan did anything work for you? How is your hair now?
Thank god I found this Ive got the same thing but much less severe. Just phoned the GP shes going to get back to me 11th Jan but I am insisting in getting to a dermatologist .Did they get on top of the scalp burning and itch .? I've had it for a year Btw you look amazing .Merry Christmas to you and your family.
It is a journey that you are not alone. You are beautiful with or without hair. Remember hair does not define you of who you are within. ❤
For hair regrowth, try pure rosemary oil. It is a healer, and it is stronger than minoxidil. I was diagnosed with the same years ago.
Hi
I believe I have this condition. I have had Lichen Planus off and on from 2012. Today I found out I have a bald spot in my head. I going to make a dermatologists appointment tomorrow.
I found out I had LPP back in 2007. I don't know anyone else personally who has it, thank you for your channel. God Bless.
Hi, would you be so kind as to provide an update on how you are since connecting with me. How have you been managing?
@@genevalewis5220 hello! My LPP seems to have calmed down. I haven't had any of the intense itching in about a year. My hair has not returned in my area of loss. However my remaining hair is healthy which was always my goal of preserving what I had. How are you? I hope you are well.
@@t.thompson8985 Lovely to hear from you and thank you for the update, it’s unfortunate this condition is such that once you have had significant loss the hair doesn’t seem to grow back in those areas. I’m happy to hear that the rest of your hair is healthy👍🏽🙏🏽😊 did you use anything in particular to retain the rest of your hair? I’m ok to be honest? I’ve had more loss but I honestly am so over it! It’s guess it’s just acceptance on my side. Thanks again for responding to me it’s really great.😊
@@genevalewis5220 I did the steroid shots for a while, about a year but I stopped. Just used topical meds for the itching until it finally stopped. As far my hair I use protective styles and half wigs for versatility. I keep my hair moisturized, take biotin and hair supplements. It is hard to deal with, but I try to keep perspective that it is just hair. There's a congresswoman here in the US Ayanna Pressley that recently went public about her alopecia, such a hero! I hope the best for you hon.
I was diagnosed with FFA which is a form of LPP. This is such a traumatizing condition, it happens slowly then all of a sudden you're missing patches of hair. I have used just about everything under the sun to grow my hair back, with help the of a Dermotologist but not much luck. I cut my my locs off, some of my hair has grown back but I still have those bald spots. Wigs help, and some meds help also. The burning and itching is so painful even washing my hair can be painful, I don't shy away from talking about my hair loss it seems to be the new conversation piece now a days, because so many women are suffering from some type of hair loss. I pray they find a cure one day soon.
Hi Chris
Thank you for connecting with me. I’ve never heard of FFA, there are so many different types of hair loss conditions which unless you’re affected by one of them you don’t even know they exist.
Traumatizing is an understatement for this condition because it robs you of the things you grow up being told makes you beautiful. Like you all areas of loss have not regrown, for me they’re no longer bald patches but baldness entirely at the crown, sides and back. Those areas are as smooth as a baby’s buttocks 😔. I too wear wigs in fact that is all I wear, I keep saying I’m going to shave off what’s left but I haven’t built the confidence up for it yet. I’ve been using pure aloe Vera on my scalp to help with the itching and on wash days I use the Nigerian black soap on my scalp some times other times it’s the tea tree shampoo. I use a combination of natural oils after to moisturize. I’ve recently started taking hydrochloriquin but I have reservations due to one of the side effects being that it affects peoples vision. What do you use? And how have you been coping?
Hi, i have suffered with linchen since 2009, but to be fair struggled with hair loss for 23 years. I was diagnosed in about 2015. And i also had been diagnosed with a urticaria and graves disease. Its been hard but i had to process that this is me now and it dosnt define me. Some days is okay and other days is hard. But i see i am not alone. Take care thank you for sharing X
Hi Raiyan, happy to hear from you. I am pleased to hear you are not allowing this disease to define you. It takes a special type of strength to be able to not allow ourselves to be dragged down and to see the other beautiful qualities about ourselves, even when we struggle with hair loss and other skin conditions as a result of our diagnosis.
I hope I will continue to feel encouraged to post updates about my struggles and the path this condition has taken me on, and by doing so my intention is to encourage others and bring awareness to Lichen Planopilaris.
Thank you for connecting and stay blessed.🙏🏽
@@genevalewis5220 and thank you kindly for reaching out to us all. We appreciate you and will continue to support you also. Take care lovely lady❤️🌹🌹
I too have LLP. I know very little about it. I’ve lost hair in frontal area, so I have to part my hair to the side to hide the baldness that’s visible otherwise.
I’m not sure if LLP, is linked to other auto immune diseases and or if we are prone to develop any???
On the good note and trying to stay positive, it’s not a terminal condition. When needed I will start to look for wigs. If anyone can recommend any that are as natural looking as possible. Blessings
Hi, I was diagnosed with LLP a year ago..I am so depressed cause my hair completely fell out at the top, front and sides so I eventually shaved my head bald.. I have no hair on the rest of my body either. Recently my eyebrows and eye lashes are also falling out.. I've been to a dermatologist but the treatment in my country is too expensive so I'm doing alot of research on herbal medicine but nothing seems to be working either especially for the itching.. As of now my head is covered in Patchy scales.. I don't know what to do again.. Have you found anything that's helping you with LLP? Thanks in advance..
Hi
Nikoya, thank you for connecting.
I have seen your message and will respond properly by the end of the week.. Have a blessed day looking forward to connecting with you.
Have you looked into salicylate intolerance? Also, please consider emu oil or rice bran oil, especially if you have salicylate intolerance. Not magic cures but might help to lower the inflammation. A lot of oils and foods are high in salicylates. Best of luck and God bless!
❤️
Thanks for sharing!! Keep us updated!
Thank you so much for this.
Hey Matodzi
You are very welcome. Thank you for connecting with my channel and I hope it’s been a helpful experience.
Hi I’m 22 years old and I’ve had the same issues as well. My hair started shedding extremely bad in October of 2019, and then after a month a noticed a bald spot. I was relaxed at the time and stop getting relaxers. I was able to see a Dermatologist in December, and they told me it was between ccca and lichen planopilaris but leaned more towards ccca. That same day I started steroid shots to help reduce inflammation and I take biotin as well as two oral antibiotics daily that were prescribed by my dermatologist. I also use women’s rogaine daily in the infected area and Ive noticed some changes.My Dermatologist is one of the best at treating ccca so I hope all goes well 🤞🏽
Cheyenne Campbell hey Cheyenne so very happy yours have been caught early and you’re getting treatment. Sorry to hear of your diagnosis because hair loss can be hard on us. I have never had the steroid shots as the dermatologist I was seeing didn’t seem bothered about my visible baldness. I’m ok with the condition now and I no longer allow it to stress or depress me. I wear wigs daily and that works for me.
I hope your treatment works and I’m wishing you all the very best. Please do share if your treatment is a success as this will be inspiring for others.
Grt plz tell me your medicine
@@learncivilengineering3477 I was prescribed spironolactone and oracea which is a form of doxycycline.
Hi @@beyondcee6564 . My doctor prescribed spironolactone for me. Did you have any side effects from this medication and did they go away? They made me tired.
I was just diagnosed with this and would like to know how you are doing now and what treatments were giving to you. Hope you are doing well.
Hi Rafaela, so sorry to hear about your diagnosis. I’m in a much better place mentally and emotionally having being diagnosed over a year ago. I haven’t taken any medication because from research and also confirmed by other sufferers the medication causes more damage than good and is not guaranteed to cure or restore hair already lost. I made the choice to refrain from using any drugs because I wanted to be active and alert for my young kids. Thanks for reaching out and please keep me posted on what decisions you make as each person reacts differently to medication and the choices I have made are personal to me so please don’t decide against medication because of another persons decision.
I officially found out August 25, 2020 that I have LLP. I have a small bald patch top front portion of my head. I’m currently going to the dermatologist and she started me on a topical medication and some pills. I have another appointment in December to see where I go from here 😢
Sorry to hear about your diagnosis joy😔 however the good thing is it got caught early so hopefully with the treatment it won’t spread and you won’t end up with scarring. Please do a diary on the medication you are on, and give us a feedback on your progress- also be mindful of the pills because if they are steroid based then you will gain weight ( dunno if that’s something you would be conscious about). Are you UK based?
I felt the fate of your GP under reacting to your condition. Truly i have learned from you and I will pay more and more close attention to my patients before things get worse like your case.
God to add you more calories of life dear
Thank you Robinson, Doctors who are passionate about the work they do generally listen to there patients, in most cases this proves to be the most effective choice. I was very angry for a long time even blaming my GP for my condition But! I have since come to terms with it hence my being able to share my story with others. Thank you for connecting and stay blessed 🙏🏽
Hello you are very beautiful!Thank you for making this video and sharing your story with us. I know it is not an easy thing to do. I was diagnosed 3 months after having my daughter in 2010. I have lost alot of my edges and eyebrows completely. And I continue to have hair loss even while getting the injections in dr office. It can be very depressing at times for me as well. I can disguise the hair part sometimes with how I style my hair but I had to get mircoblading on my eyebrows because drawing them on everyday became very time consuming. I wanted to ask anyone if they have tried nutrafol vitamin for this. And what medicines did anyone find to be helpful in stopping the fall out?
PinkSkittlesss thank you for connecting, you are the first person to have declared that the effect of LLP has also affected your eyebrow. I’ m also considering Microblading but unfortunately it’s not the cheapest if you want it done properly here in the Uk. I’m regards to the injections I was never offered that from my dermatologist mainly because I think by the time I got diagnosed the progression of the LLP was too severe. I was given a few topical creams which all caused irritation to my scalp so I discontinued the use and now I don’t use anything as I have resulted to wear wigs.
A lot of the medication people have access to in America and other parts of the world are not available in the UK . I haven’t given up but I am beyond allowing this condition to control my daily emotions and life. You are also very beautiful, thank you for your compliment. Does any particular medication work for you and where in the world do you live.
@@genevalewis5220 Geneva Lewis Thank you! I'm in California, United States. I'm sorry certain things are not as accessible to you. But to be honest I worry about the long term use of these scalp injections I've been getting for the past year. but my fear of losing all of my hair pushes those worries to the side. This all started for me in 2010, but I kept pushes off getting the injections because i just Hope's it would improve on it's own. I wish there were more options for us all.
Microblading i got was pretty expensive ($400.00) way more than I wanted to spend. But the insecurities I had with my brows being gone was really getting to me. I have a family and felt selfish spending that much on myself. But I finally saved up and decided I would do it for myself if it meant me feeling a little better about what was happening. I think you should also know it does fade over time so I have had to get it touched up about every 2 years. I also learned you cant get it done to often because it can damage your skin. The "microshading" stays much longer than the "microblading" because places the color deeper in the skin. I'm sorry for my long reply I have so much to say :) I pray your able to have it done too one day soon. You are worth it! I wanted to suggest a product I used to draw mine on before I got them done. It is called But if you have access to this Kat Von D product its called ( KVD 24-Hour Super Brow long wear pomade) you need to apply it with a angled brush and goes on very smooth. Once it dries it stays on very long. U can get it wet and it stays! I'm sure you can orders it from Sephora.com. I really hope that helps! I'll keep you posted about anything i try and works so hopefully you can try it too.
would love to see you try a product Hollywood Hair Bair used on your spots as a review or testimonial ……
Hi , sounds like a good idea. People suffering from my condition are always looking for recommendations as we still hope to one day find something to reverse the condition.❤️🙏🏽
@@genevalewis5220 There's: Hollywood Hair Bar, Kaliedascope, MNMC HAIR LINE GROWH SERUM sold on ETSY, GODDESS HAIR OIL Sold on ETSY...… (mind you I don't know where your spots/troubled areas are) But it would be Awesome for you to document your progress (Before and After Footage) using one product on one side of the scalp - while using a different product on the opposite side of the scalp..... (and documenting results along the way) #FoodForThoughtGoForit
I have the same diagnose, my doctor prescribed me Finasteride and my hair loss stopped, but I have to deal with the side effects. I really recommended it for you, ask your doctor if you can take it.
Mohammed Ali , Thanks for reaching out. I was initially diagnosed with topical treatments and then in recent times they offered me the injections in my head. I have never been prescribed that particular medication, where are you based? Not all of the drugs I’ve been told about is available in the U.K, not sure if your recommendation is available here but will surely enquire .
@@genevalewis5220 hi, keep doing the injections it works, any updates about your condition? Have you ask your doctor if this condition goes away?
Mohammed Ali hey, thanks for connecting & sharing. Did you loose hair to bald stage before starting the injections? The areas I have lost hair nothing hasn’t grown back for months and I’ve been told I have scarring, if there’s a chance I could have regrowth then I’ll be happy to try.
@@genevalewis5220 I didn't have scarring, but you still need to use injections since steroid helps a lot in reducing inflammation and stop the hair loss. I totally feel you this condition is very irritating, but the good news is that you can get a hair transplant on the scarring area after the condition goes away- I read some articles saying it may goes away so there is hope for us
Mohammed Ali I will definitely enquire about whether I can get the injection on the nhs. If you’re not financially stable and have to rely on the nhs for treatment the waiting time can take forever and by the time you receive treatment if you do the condition might have already gotten worse. I’ll just have to wait and see what happens.
Hi. I emphataze with you. I'm also having LPP. What i see in the video is that you don't really have any redness, or am i mistaking? My whole scalp is red + eyebrows... soo i was just wondering about this aspect
Needele Hi, so sorry to hear about your diagnosis, I do have red itchy
scalp whenever I have a flare up and my eyebrows are completely gn and the area is red . What you see is my coping mechanism where I used to use brown eyebrow pencil I now use black as it covers the redness better. I have been experimenting with different oils like peppermint and eucalyptus, I use them to wash what’s left of my hair whenever it gets itchy. It does calm down at times dunno if its to do with my change in diet but some days are worse than others. I’m not on medication for it and don’t think I’ll take anything that’s currently on the market. Hope you find something to calm your scalp down if you do please feel free to share.
Geneva Lewis there is pretty large Facebook group called “Lpp let’s put out the fire”. Maybe you already know.. just in case though. We are all in this together. 🙂
Needele Hi, I’ll definitely look for the group and get connected. Thanks for sharing.👍🏽
Diagnosed a couple weeks ago. It’s so demoralizing. I’m 58 now but noticed several,years ago the thinning, then in 2018 had serious illness and my hair came out like a cancer patient’s would. Hair everywhere!
Hi Julie,
So very sorry to hear about your experience with LLP. This condition is quite brutal and ruthless, what’s sad is there’s no known preventative measures to stop the initial attack. I’m sorry to hear you were unwell and I hope you’ve now recovered? Have you lost all of your hair? Are you taking any medication to stop the inflammation of the scalp? Do you have the other symptoms also like the sore tenderness of the scalp, the itching and the sore spots that sometimes come up? If you do how have you been coping?
@@genevalewis5220 I got a new Rheumatologist and am on Hydroxychloroquine. I have the typical “hair band” loss. So around the top front and sides. I wear headbands and a lot of hats. I have multiple autoimmune disorders. Hope you are doing well.
I was diagnosed with Androgenetic Alopecia but only some areas seem to grow back and I’m worried I may have it mixed with this. My scalp is not red but I feel a burning sensation and even wind blowing causes me pain. I’m only 19.
Hey lovely, thanks for connecting. When did you get diagnosed with Androgenetic Alopecia? I haven’t heard of that form before but based on the term genetic I’m assuming it’s hereditary. Does anyone else in your family circle have that condition, these are questions you would need to ask your family, on both sides if that is possible. If no one else in your family circle have the condition you’ve been diagnosed with then I would suggest you seeing a dermatologist for a second opinion. I know this or any autoimmune condition must suck especially because you’re only 19 and trust me I understand the effects it can have on your confidence. Try the options I have mentioned and please let me know how it went. If you need to have a chat or join a support group connect with me and a bunch of other ladies battling LPP and other similar conditions on my Instagram page Lichen Planopilaris Journal.
@@genevalewis5220 I was diagnosed last year (18 years old) but the hair loss started 2 years prior. He told me I had Androgenetic Alopecia combined with Chronic Telogen Effluvium and Tricodomia (pain syndrome). However, only a few areas have regrown (top and hairline) and other have not (left side of the crown, sides and in the nape area), which leads me to believe I may have some kind of scaring Alopecia mixed with it. It has pretty much almost wrecked my self confidence. I’m thinking about seeing a second doctor. Do you have a Facebook group?
@@Carolina-rd3gh I am so very sorry to hear about your different diagnosis and the conditions you are living with. I can only just imagine how difficult it must of been for you emotionally and mentally. Definitely do go back and get a second opinion, are you on medication? How are you managing your symptoms and are you getting side effects from the medication you’re on?
Yes I do have a Facebook page however I have been told by people they can’t find me send me your Facebook details and I will add you. I will do some research on the other things you have been diagnosed with as I haven’t heard of them before. Sending you big 🤗. Please stay in touch.
@@genevalewis5220 I am currently on Finasteride, which is a very controversial drug in general used in men but in some countries is banned for pre menopausal women. I’m taking a high dosage as well since my case is very aggressive for my age. I tried oral corticosteroids in the beginning alongside it but my body had a terrible reaction to it (skin thinning and easy cuts everyone just from putting on clothes, lack of balance that stopped me from walking for a few hours and the side effects did not slow down). I’m also using an Anagen stimulator for regrowth but as I said it was only able to regrow certain areas. My sides are very thin and the most concerning area for me.
I would love to join a Facebook group for hair loss! What details do you need? Can I dm you on Instagram with my details?
@@Carolina-rd3gh yes please go ahead and DM me
This condition sucks to have . I have had it since like 2008. I've had injections for like 4 or 5 years. It didnt do shit for me really. I havent gone to the Dermatologist in almost a year. Steroids seem to make it worse. Im thinking of going to a functional doctor to treat the cause which is having an auto immune condition. Only good news in my case is being a guy with experiencing the hair loss. It must be more devastating for a woman but still no picnic for me regardless.
I developed LPP from using henna and indigo hair dye. However, I do not have any burning, itching, or pain. It’s been five years now, and I have lost 50% of my hair. Initially, I was diagnosed with alopecia areata, and most recently I was diagnosed with LPP from another doctor. I do not have any auto immune diseases or health issues. Please help!
Hi, thank you for reaching out. I’m so very Sorry to hear of your diagnosis and that you’ve experienced so much hair loss. Reading what you’ve written I would ask for a second opinion on the diagnosis you’ve received given that one doctor said alopecia and the second one said LPP.
LPP as well as well as Alopecia are both autoimmune diseases which causes your immune system to mistakenly attack a part of your body. When you have alopecia areata, & LPP cells in your immune system surround and attack your hair follicles (the part of your body that makes hair).
Most people who have communicated with me regarding LPP have had similar experiences to me having itchy scalp which can be very painful and sensitive. The hair in my case became quite brittle prior to it falling out.
When your doctor diagnosed you with LPP, did they offer you any advice or medication? Are you currently taking anything? One of the most common medications being offered for this condition is the Hydroxychloroquine also known as Plaquenil. Hydroxychloroquine is considered as a disease-modifying antirheumatic drug Immunosuppressants a group of drugs that lessen the activity of your immune system.
Be sure to explore your options if you choose to take medication and always look into the side effects before making your decision to take any.
I’m not currently taking anything because I felt the side effects outweighed the benefits of the drugs.
Outside of that I just make up my own combination of oils to keep my scalp and the little hair I have left moisturized. I also take supplements like zinc, irons, vitamin B & D.
@@geesgoogleaccount2866 I just went to the dermatologist yesterday. I will be having another scalp biopsy done in a few days. During the appointment, my dermatologist asked a pathologist who works in the office come look at my hair, and she said she thought it looked like LPP and not alopecia. They asked me if I had any pain burning or itching, and I said no. Never have. He did mention some medication’s, but I don’t remember what he said. I am currently not taking anything. They said LPP is hard to treat. I guess I don’t know what it is until they do the scalp biopsy and get the results. I’ve never had any burning itching or pain, but I do know it’s been slowly eating away at my hair. It must be LPP because I don’t think alopecia takes that long to fall out. And all because I put those chemicals on my hair. Biggest mistake of my life. I guess I was hoping that it would all just go away and I didn’t want to think about it. My hair is ruined, and now I am terrified and I’m beginning to become very sad and depressed. Initially the dermatologist looked at a previous biopsy from the other place I went to, and they said I have non-scarring alopecia areata. And he recommended the new medication Olumiant. I was reluctant to take that because it has severe side effects, a black label warning. So I’m not sure about this other medication, but I know that I don’t want to go through life and end up completely bald. Right now I feel sick to my stomach. I’ve always been super healthy and I have nothing else wrong with me. Maybe I will go back on an anti-inflammatory diet and see if that will help. I don’t know.
I was diagnosed with LPP in fourth grade. I am now turning 15 and I’m being bullied really bad. I have giant spots covering my body and I’m very insecure
Hey honey, I’m so very happy you’ve reached out to me. I’m very sorry to hear about your diagnosis, and you being bullied. Are you on any medication at the moment? People in this world can be very cruel and tend to make fun of and treat others unkindly. LPP is a rare neurological condition, many people have never heard about it and aren’t aware of how badly it can affect the people who are affected by it .i know it’s hard to not listen to mean comments and react to being bullied but you will have to try and ignore them. I please be reassured you have found a friend and I can promise to be there to talk to you and encourage you on those not so great days .please do stay in touch.
You will be okay because you have LLP you are already stronger than the bullies -
Hey sweetie, how are things for you now? I’d be interested to know things you’ve tried...Really hope your ok 🙏🏽❤️
hello thanks for your video. I am writing from Turkey. Although I could not fully understand your video, I understood it more or less with the help of subtitles. I have the same diagnosis. but my doctor said that the only reason is stress and unfortunately there is nothing to stop it. The diagnosis was made in 2016, but I was dealing with it before. Do you have any other information than these? What else could be the cause and what did you use in your treatment?
nasil gidiyor su an?
Hey I was also diagnosed with LPP and Lichen Planus...it is so stressfull...i found out in March 2020 , and my skin in so inflamed and my edges are completely gone...please share ur journey so we could learn from you
Hey Vuyo, I am so very sorry to hear about your recent diagnosis.😔 The onset of this disease is very stressful especially with the discomfort that comes with it plus the hair loss. I have always expressed to others that we all respond to it differently but I must confess we are all plagued with the initial shock, stress and acceptance of the diagnosis.
My journey started pretty similar to yours and it took almost 2 years before I was finally diagnosed by then I had already lost a significant amount of my hair and already had scarring in the areas of loss.
The hairstyle I was wearing in the video I posted was the first stage of me accepting the condition and then conditioning my mind to not let the fact that I had lost a significant amount of my beautiful hair be the defining factor to my happiness. Don’t get me wrong each day was different, there were days when I was so depressed that I just wanted to get some clippers and just shave everything off so I wouldn’t have to witness how I would be impacted further.
I refused to have steroids injections which was offered only because I already had scarring and it was pretty much confirmed that the chances of regrowth In those areas was very slim. I chose to shave the sides and back off and that became my signature look. I am in my 5th year of having the disease and have witnessed no re-growth in the areas I have lost hair, I have no creams or treatment I can attest to, to say they helped. When my scalp becomes itchy and sore I wash with head & Shoulders at times adding peppermint oil or tea tree oil. I massage my scalp with a mixture of peppermint, coconut and tea tree oil but I’m not using any prescribed emollient or taking any medicine. I now wear wigs and occasionally go back to my signature style . I now go by the motto, ‘My Hair doesn’t define me’ . It’s hard I know but dependent or where you are in the world treatments can be very expensive and it’s not guaranteed they will work. If you can afford treatment then yeah go for it but please focus on all the other beautiful aspects of what makes you you! Learn to love yourself unconditionally hair or not and whatever choices you make for your hair embrace it and rock it with confidence. I wish you all the very best and do hope you find a treatment that works for you, & if you do please share so others can also try. Stay blessed and keep connecting. 😘❤️
@@genevalewis5220 Thank you for bein an inspiration to me....I pray i find my motto but its hard to see that when everyday is a struggle, cant afford expensive treatments but my dermatologist has sadly told me ther just is no cure .that broke me even further i only thirty and I am loosing cinfidence in myself...as i never care about what others think of me ....but if it starts eating me personally then it messes up with self confidence....hopefully i love myself allover again my inflammation of dark skin patches clears out(dermatologist said it might het worse and never recover) but God id my witness I will recover...Thank you so much lookng forwatd to ur other videos...God bless you and your family
Vuyo Khoetha Hey you, your reaction to this condition at this moment is normal. It may take a long time for you to get to a place where it is no longer the focus of your attention. I often remind others and even myself that we aren’t going to respond to the prospect of hair loss the way we probable would accept other illnesses, and that is mainly because our hair is our crown and most of us are raised to believe our actual hair is what makes us beautiful.
Don’t get me wrong the hair does bring out certain elements of beauty in us, a changed hairstyle or look often boost our confidence. But people like us who have been diagnosed with this condition and start suffering hair loss now have to recondition our minds and that is not going to be an overnight process. It took me a long time to accept that this was going to be my new reality, I went through stages of depression, of asking myself why me and stayed in a dark mental space for a very long time.
1. You will need to first accept that you have this condition,
2. You will then have to find an hairstyle that conceal any hair loss you’ve already experienced.
3. Once you have found your hairstyle, you need to own it, & as hard as it might be for you to display confidence you’ll have to find a rock your new look.
Your confidence has been knocked, but only you will be able to rise against this new challenge. I am offering myself as a support system to you and will be here to help you get to a place where you can start feeling comfortable again. Take care of yourself & please update me with anything new
I read your articles and I caught this disease, my doctor, I used the drug called plaquenil for 7 months, there was no improvement, I have not used any medicine for the last 2 months. Can you recommend me a herbal soap lotion vitamin diet?
I initially didn’t use any treatments but I’ve just started using a shampoo called Etrivex to help with the itching. I don’t know yet if it works because I’ve only just started using it this week but will definitely provide an update. I’ve been a bit more stressed recently and that’s generally when I have flare ups. For vitamins I take vitamin B, D, iodine and magnesium.
Turmeric ointment, coconut oil also will help topically. Eating a plant based diet helps lower inflammation too.
I just got diagnosed with this. I need encouragement.
Hey Asia
Thank you for connecting, so so sorry to hear of your diagnosis. Please can you tell me a bit more about your symptoms, how they are affecting you and what’s been happening leading up to your diagnosis?
I too have LPP. So depressing!!! I do see an excellent dermatologist and he gives me steroid injection in my scalp every 6 weeks. It sometimes helps but it is an incredible disease. It’s devastating for.....especially a woman to loose their hair.
Hi Jo, so very sorry I missed your message. I am equally sorry to hear about your diagnosis.
Now that you have had the steroid injections can you confirm if they have stopped your hair loss? Are you still receiving the injections? Please do give an update on your current situation and if there’s been any improvements. This is definitely a very awful condition to have, it plays havoc on so many peoples confidence. Hope your journey haven’t been too difficult.🙏🏽😘
@@genevalewis5220 Yes the steroid shots helps. My Dermatoliest told me I would have to take them the rest of my life. I go every 6 weeks.
Hello Mama Nevaeh
Hey sugar
Stop beliving what some one say doctor or not .i lost the whole top of my hair bald .The Doctor said it will never grow back ..I told him u dont know who u dealin with oh my hair will be back .guess what it just about back .by the my hair line was gone .once u belive it will not come .my hair looks great .
Thank you Thelma for your encouragement. Do share what you did, products etc. to help with regrowth. This is a safe place for all people affected by This or any other autoimmune disease that affects their hair to share their journey, products used etc. I’m always as are many others on here looking for a solution to this condition. ❤️👍🏽 do stay connected 🙏🏽
I have this same disease. I would like to talk with me. Would you get back with me.
Hey, how can we talk? Let me know
Love from Turkey♥️ i have LPP since 6 years, i lost my %30 hair and it's still continue to damage my hair. So in here, in worldwide can anyone solve that problem? I use cortison and methatraxade.
Hi Halil, welcome to my channel. Thank you for reaching out. Did you get diagnosed by a dermatologist?
Hi geneva, of course, I diagnosed by dermatologist but there was no solution for this illness. I hope and i dreamt about this.
@@halilalimli2436 hi Halil, unfortunately I had the same diagnosis and sadly my dermatologist has said there is no cure for this condition. By the time I got diagnosed I had already lost a significant amount of my hair 🥺 Currently I’m not on any meds having taken a number of steroids and using different creams all of which has not made any difference to the condition. I will keep searching but sadly I haven’t found anything yet that works.
@@genevalewis5220 Hi geneva, currently I read the book which is offering treatment about that situations called autoimmune reactions. I'm trying this nutrition protocol because I wrote the author and she said that I have a cure for you. Once I start this way, I felt energetic, pozitive, healthy and I dont care about painfull arthralgia, it's already lost. But I don't have treatment about hair follicules, I hope that I will stop hairloss.
Hey Halil, lovely to hear from you again. It’s great you have found a book that has influenced you to try a different approach. Often it is said that if you change your diet it will influence your body’s reaction to different illnesses. This book sounds great, where can I get a copy from? I have a recipe with different oils blended together with avocado to wash the hair, this is meant to stimulate the scalp and encourage follicle growth. I personally haven’t tried this yet but will have a go at it this coming weekend.
Ingredients- 1 avocado, Jajoba oil, sweet almond & castor oil, rosemary, peppermint & coconut oil. Blend all together with the avocado and use to lather your hair & massage the scalp. Use a shower cap to cover and leave to sit on hair and scalp for about an hour rinse out and condition with a conditioner of your choice.
Stay in touch! And do send me more info about the book