LICHEN PLANOPILARIS (Scarring Alopecia) Documenting the Journey with Geneva Lewis

[@TheNubianAngel]

Ladies thank you. I feel you both, I have all three, lichen planus, planopilaris, sclerosus and days I cry and wonder why me, but seems we are so many of us. When I shaved my hair off my step daughter we get weekends said a looked like an alien.. the saying goes "out of the mouth of babies....." but that little innocent comment just threw me off and now when she is here, little older I always have a wig on. My hair although 4c has always been my crowning glory but that's thing of past. Thank you for your words of wisdom. ❤

[@laurajean9999]

As Geneva related her experience, it felt as though much of it was lifted out of my own story. It was remarkable to hear the similarities. I appreciated her straight forward, honest persona. Thank you to her for this important message for those who suffer from similar issues. I would love to follow her for more about her experiences. I was quite moved by her courage to share such a personal experience. Many best wishes!

[@StationVicE]

Yea please follow her she is so sweet, honest and open. The details are in the description.

[@21apatt]

I think the diet has to be reviewed. I am a nurse with this issue. We must remove the inflammation out of the body. Removing carbs and sugar from the diet helps to get rid of internal inflammation. I am unable to wear synthetic hair and can only wear human hair. I do have areas on my scalp with very thin to no hair follicles. I also have had hypothyroidism for 22 years and taking thyroid replacement meds. I truly do believe all of this is a contributing factor, but I believe this disease can somewhat be controlled by adjusting the diet.

[@StationVicE]

Thank you for sharing. I think alot of people would like to know more about what to do with diet. Definitely see more and more people speak about similar issues that are not as likely known.

[@ayyb6789]

Do think exercise 4 to 5 days will help?

[@daCubanaqt]

Diet and exercise are so important. Sadly, autoimmune diseases can be caused by environmental factors like bacteria and viruses. So crazy!

[@21apatt]

I have been healed and my hair has grown back since making this post. I am free.

[@21apatt]

@@ayyb6789 yes, I do think it would help. Your primary goal should be to reduce the inflammation in the body. Different foods cause inflammation like an allergic response.

[@Oceangirl1234]

Love these videos and just found you. I am devastated having been diagnosed a few years ago. It changed me and my life in a way that is not healthy. Not sure how I can get through this emotionally. It is really devastating for me. Thank you for your video.

[@StationVicE]

I totally understand. When I found out I cried in the doctors office. I hope you find a way to cope. I definitely feel like sharing has been therapeutic for me. I also get to learn from so many others just in the comments. 🙏🏾🙏🏾🙏🏾

[@juanamendoza8278]

I was just diagnosed yesterday with this condition and when I was told it was a bit of relief because I no longer was being made to feel like I was just over reacting about what was going on and that I wasn't being dismissed and just being told oh it's just your thyroid and once I was properly medicated my hair loss would stop and regrow again ,but it never did and just kept falling out !! My head would itch real bad to where it would feel like something was crawling in my head and then I would experience burning .I have been dealing with this since I was about 18 and now I'm 41 !! I got so discouraged with this and yesterday I got so upset because I just thought had I have been listened to years ago maybe I wouldn't have lost most my hair by now ! They did injections and those hurt so bad and made my head hurt for hours after I had it done and stung so bad that I had to miss work ,and it's not even a guarantee that it will even do anything for what hair I do have left ..It's depressing.

[@StationVicE]

So sorry to hear that they misdiagnosed you. Its disappointing that they didnt catch it earlier. For me one of the reasons I wanted to share is so others would learn and understand not feel alone. I think the more we speak up the more we will help others be heard.

[@demi5378]

Been diagnosed with LPP, my sensitivity & hair thinning is centered in my crown area. I have to be very careful for when it is sensitive it takes time to calm back down. Trying to be as natural as I can with what I use. Was in the sun for a few minutes & it caused an issue...still working on recover. It's a stinging sensation I'm experiencing...just trying to keep it moisturized & leave my scalp alone...it does not like tension or touching. It's trial & error every day. I'm not claiming this condition, but I'm officially 2 years on this journey. Thank you both for sharing your story.

[@StationVicE]

Yea doctor told me early on no tension. Thank you for sharing your experience as well. Please look into allergens and possible things that are in your diet too.

[@columbusmcghee7654]

I really appreciate both of you for sharing your experiences. I also have LPP and it is a constant physical and emotional challenge.

[@StationVicE]

Hi Columbus, it's been really therapeutic for me to share with so many people and know that I'm not alone.

[@mirfurkan8842]

@@StationVicE hey dear i have been diagnosed with LLP in early stage what should i do , should i take cortecosteroid as prescribed by my dermatologist

[@StationVicE]

@@mirfurkan8842 Hi I am not a physican so I dont want to make any recommendations on what will work best. For me personally I tried the topical steroids and it didnt work. I was also in fear that it would cause a bad reaction long term. It shouldnt go in your eyes or get on your hands. I didnt like the possible side effects or the way it made my hair feel. Ask the doctor the success rate and side effects and weigh the pros and cons. Make the best decision for you and your life. Look at possible triggers in diet and environment that make you have flare ups. Sending prayers and well wishes your way.

[@mirfurkan8842]

@@StationVicE thanks will surely ask for..

[@daCubanaqt]

LPP doesn’t affect enough people to generate a lot of research. It is pretty sad to think that the reason why there isn’t enough research because there isn’t enough money in it.

[@poppadoc5614]

Maybe more would be diagnosed if drs listened. I had to literally demand a biopsy after seeing 4-5 dermatologist a year for 4 or more years. I had skin cancer so the checkups were warranted or else insurance wouldn't have paid for the constant trying to get help.

[@StationVicE]

Yea, I hope one day there could be more research.

[@marshellbrown9641]

Thank You for this video, I was diagnosed with LP and FFA prior to that for years I was diagnosed with Hosimotoes (autoimmune of the thyroid) 2018 I had a bad stress experience my hair started to fall out in the top and around my edges I got the bisopy which was FFA and LP I was told that if you have one autoimmune disease you will have more...I went on this journey to help myself find some relief to stop my body from attacking itself...probiotic for balancing my gut Vitamin D3 for the immune system Vitamin A for my skin and I eat alot of veggies, salmon and fruit, I do eat a Brazil nut for Selenium..my mine focus was attacking Hosimotoes first once I did that things started going in a better direction for me in other autoimmune issues that I have.

[@Linjt1224]

Menopause brought this disease on for me. My primary Dr. did a biopsy on lower back of scalp and she diagnosed me with non-scaring alopecia. I went to a dermatologist and he did a biopsy on top of my head and he diagnosed me with LPP. Doxycycline made it worse and so did topical steroid. This disease started with a feeling of bugs crawling all over my scalp, itching, excessive hair loss and later, burning. I may try hydroxychloroquine.

[@StationVicE]

Thank you for sharing your experience. Have you found any ways to cope with the disease?

[@Linjt1224]

I tried Doxycycline and a topical steroid but it got worse. I know sugar, stress and caffeine also make this condition worse. I am going to try HCQ soon. It would probably be helpful to use something for allergies but I have dry eyes and those meds make it unbearable.

[@tuheshugordon6250]

Your symptoms are exactly the same as mine when I got diagnosed with scalp lichen planus. How do you currently cope or resolve your symptoms?

[@Linjt1224]

@@tuheshugordon6250 I found that my symptoms are much worse from sugar and caffeine so I avoid them and only use a topical steroid for pain and itching. I decided against all other meds. The Dr. said it may go into remission after menopause. Stress control is important too. Good luck!

[@TheNubianAngel]

I think menopause sped mine up i had emergency hysterectomy and hair loss increased. I thought i just alopecia so did home remedies rosemary oil etc, but nothing was working then seen dermatologist a little over a year ago and and lichens disease diagnosed upstairs and downstairs😢 still undergoing review stopped taking plaquenil as side effects weren't good so waiting to see what dermatologist has in store for me next in 3weeks time

[@carolwong5949]

It can be so frustrating, particurly when you have the burning in your scalp/

[@StationVicE]

Yea its such a unique feeling

[@user-se8le2md7v]

If you are taking essential oils make sure you dilute them first so you don't burn your scalp

[@misscrystalz16]

It looks like Geneva has FFA, a variant of LPP - it affects the hairline and eyebrow. unlike LPP which mainly affects the crown

[@user-se8le2md7v]

Try using (ALOE VERA Gel) , it may help cool down the inflammation on your scalp.

[@user-se8le2md7v]

Try and use natural (anti inflammatory supplements) like , Zinc , magnesium , Vitamin D3 etc

[@pavanreddydukka4594]

Hi mam I'm sanju reddy My wife is suffering lichen planopilaris So is there any cure for that or is there any alternative source Please suggest she is feeling very sad Kindly help us to resolve the issue

[@shahidakhan8465]

Hey yes it is curable ..if you are from mumbai plz consult Dr yogesh kalyanpad at santacruz

[@mirfurkan8842]

@@shahidakhan8465 i am from kashmir having LPP and on treatment by a dermatologist who gave cortecosteroid tablets but not seeing any improvement what shall i do

[@StationVicE]

I dont know of any cure. I really try to look for triggers that make you itch/burn which may not be that easy.

[@m4451]

I have just been diagnosed with LPP and I am 50. Henna and indigo hair dye caused it. I do not have any itchiness, burning or pain. At first, I was diagnosed with alopecia areata, but another doctor says I have LPP. I have no other health issues. What can I do?

[@StationVicE]

I got a biospy and alot of people seem to go to dermatologist who specializes in these conditions to verify. Verify it first!

[@m4451]

@@StationVicE I finally got diagnosed and they said it’s mild non-scarring alopecia. So I guess that’s good!!!

[@StationVicE]

@m4451 non scarring is better because you're hair can grow back in that area and you could get a hair transplant if you wanted.

[@m4451]

@@StationVicE thank you! They said my follicles are shrinking though, which is sad. I’m still so depressed about all of this. I’ll be doing some tests pretty soon and they’ll give me some medication. What do you mean a hair transplant tho, if my hair can grow back?

[@StationVicE]

@m4451 some forms of alopecia allow you to get a hair transplant. So if you have hair in other areas you can move the follicles. Ask your doctor if its a possibility. With scarring alopecia it's not recommended though.

[@kumarsandeep6332]

Can hair regrow in lichenplanoplarsis disease

[@StationVicE]

Your hair can grow back if your scalp isn't scarred in that area. That's why it's a form of scarring alopecia because it inflames the area. Hope that helps.

[@Craziecat70]

Is it possible to do a hair transplant

[@StationVicE]

Im not a doctor so please consult someone for more info. but from my knowledge this may cause more damage. If you transplant hair the area can become inflamed and fallout.

[@countryfirst4285]

Mam good evening mam is lichen Plano polaris cure able plz plz advise

[@StationVicE]

From my experience its not curable like most inflammatory diseases its treatable though. You can have times where its in remission and you won't have flare ups. I suggest looking for triggers if its not too late.

[@Craziecat70]

Can the hair ever regrow back?

[@StationVicE]

Depending on when you find out and what stage you're in. If you find our early and go in remission you maybe able to save your hair. The longer your scalp is inflamed more likely it will kill the follicle and not grow back. Again I am not a doctor just going from what I learned about scarring alopecia.

[@Craziecat70]

@@StationVicE I never took anything for it and it stopped. I know the cause of mine. Which is quite strange and I was able to prevent further damage. However, it’s like a fire when It turns off it takes time. I’m hoping to get a transplant. I went into a place and they said the hair won’t regrow, however, if some of them do it means u still have blood flow there and it may be viable for a transplant. I am hoping that within the next year I can jus go a transplant and be done with it. Everybody suffers different but the doctor said mine is very minor. I just pray to god every day because I know how much worse it could have been.

[@Craziecat70]

Honestly thanks for responding you’re a really great humanbeing

[@StationVicE]

Thats promising well best of luck. Please come back and tell the results. I know others would love to know your progress.

[@Craziecat70]

@@StationVicE I will I will

[@misscrystalz16]

The only thing that can be done on scarring is a hair transplant.

[@Craziecat70]

So a transplant usually works after it has stopped ?

[@misscrystalz16]

@@Craziecat70 Yeah but even then not everyone is a good candidate. but genrally speaking if youve gone 2 years with no symptoms and no medication you can have a transplant, just be aware that surgery can reactivate the conditiopn

[@Mstayfraz]

Hair transplant will not work, because the body's immune system will attack it

[@daCubanaqt]

I would say consult a doctor about a hair transplant because LPP is an auto immune disease which thinks your hair follicles are a foreign body and are attacking them. Doing a hair transplant doesn’t solve that issue.