CCCA vs Crown Breakage 2019

Welcome!
This video is based on my experience with being diagnosed with CCCA in May 2019 and my signs and symptoms. The video is meant to be informative and is in no way inclusive. I felt that it was really important for me to share this to help others and myself.
Please do not self diagnose or rely on KZbin for this one! I have textbook CCCA and missed it thinking I had what someone else had and assumed it was solely Crown Breakage or Crown hairloss that could be fixed with deep conditioning and TLC. No.
Subscribe to follow my process. I am not a KZbinr, I am a Registered Nurse and currently in grad school for my DNP. My next appointment is July 2019 and I will post a follow up then! I’ll try my best to answer any questions as well as take any advice! 😁
My IG is jhenrn_
6/28/2019 follow up vid below
• CCCA Hair Update #1 - ...
CCCA SUMMARY AND RECOMMENDATIONS from UpToDate.com - trusted medical source
●Central centrifugal cicatricial alopecia (CCCA) is a form of cicatricial (scarring) alopecia that presents with centrifugal spread of hair loss that begins on the crown or vertex of the scalp. Most patients diagnosed with CCCA have been women of African descent with hair that grows in a tightly curled configuration. However, men may also be affected.
●A variety of alternative terms were used to refer to CCCA in the past. Examples include hot comb alopecia, follicular degeneration syndrome, chemically induced cosmetic alopecia, and central centrifugal scarring alopecia.
●The pathogenesis of CCCA is not well understood, and the inciting factors are unclear. Although certain hair care practices that can be damaging to the hair and scalp have been proposed as inciting factors for CCCA, a relationship between hair care practices and CCCA remains to be proven. In a subset of patients, mutations in the PADI3 gene may contribute.
●CCCA usually begins as a subtle patch of partial hair thinning on the crown or vertex of the scalp. Over time, the zone of hair loss expands in a centrifugal pattern, with the most severe hair loss remaining in the center. Clinical signs of inflammation, such as papules, pustules, erythema, and scale, may or may not be present. The presence of pain, itching, tenderness, or other dysesthesias in the involved area is variable.
●A diagnosis of CCCA should be suspected in patients who present with centrifugally expanding hair loss on the central scalp, particularly when the patient is a woman of African descent. Because other forms of alopecia may clinically resemble CCCA, performance of a scalp biopsy is recommended to confirm the diagnosis.
●Data are limited on the treatment of CCCA, and there are no established treatment guidelines. Support for the various treatment options for CCCA is primarily derived from the recommendations of clinicians experienced in the treatment of hair and scalp disease. (See 'Treatment' above.)
●For patients with mild CCCA (small area of hair loss, slow progression, and minimal clinical signs of inflammation), we suggest initial treatment with a high-potency topical corticosteroid (Grade 2C). For patients with more extensive disease (or with mild disease that fails to respond to corticosteroid therapy alone), we suggest the addition of an oral tetracycline-class antibiotic to this regimen (Grade 2C). Our experience suggests that intralesional corticosteroid injection may be a useful adjunct to these therapies, particularly in patients with visible signs of inflammation.
Reference: UpToDate.com

[@wordafall]

I'm glad you got it checked out. I went through the same thing but last year was really bad. I didn't see bald spots so I didn't think it was any type of alopecia. My hair would break and grow back but that area would grow back really slow then it would fall out again. I've cut my hair for the pass 5 or more years, just trying to match the length of the area that was continuously breaking. Last November, it got so bad, I couldn't camouflage it anymore. I didn't realize how stress was affecting my hair. I finally found a good dermatologist. She did a biopsy and blood work. I was diagnosed with CCCA and was told I had mild scalp inflammation. I was given doxycycline and external steroid drops. I was also given shampoo to help with growth. Today, my hair is really thick in that area and growing rapidly. I'm no longer on the doxycycline but I still have to do the steroid drops just in case it flares up again. Best wishes and thank you for being courageous and sharing your story.

[@CCCANatural]

Thank you for sharing as well, every bit of knowledge helps. I find that the steroid is helping but found it hard to use the ointment bc it was so greasy. My insurance covers the ointment but I did some research and found that the spray is more effective in multiple studies. I love the spray bc I works well with my natural hair which needs the feeling of that moisture but the spray is $130 out of pocket 😩

[@wordafall]

@@CCCANatural I have drops. Try this website for cheaper prescriptions. lowestmed.com/prescriptions/prices. Search for clobetasol propionate.

[@Elishea001]

CCCA Natural what is the name of the spray

[@ayababy5010]

After how long did u go to the dermatologist ?

[@gbatimabonney579]

Awesome and I am glad someone has gone thru this and hair is really improving. For the past 3 years I have had to cut my hair 5 times just to keep my hair neat. Definitely going to see a Derm thanks!

[@carlastockdale9623]

omg I have been sufferung for years now thinking it was crown breakage Thank you so much for this information

[@CCCANatural]

I’m glad you found the content helpful!

[@kaybailey7710]

I thought mine was stress😣

[@estherndoleriire9105]

Thank you, so much I have been having this problem for many years, now it's time I go see the doctor

[@quxxn0519]

You literally just made my day. I am a registered nurse also and I am almost finished with my NP degree. I also tried to self diagnose myself but this is it!!!!! I been dealing with this for almost 2 years now. It will grow and getting better but the intense itching makes it fall out even more. One of my braiders suggested that I got to the dermatologists because I always have a circular patch on my crown that is weak or experiencing breakage. I never went like a dummy cause I was like how are they going to help me. I stopped getting braids due to this, and tried going to a hairdresser every 2 months to help grow my hair...it didnt work. Now I tried locing my hair to see if the spot will grow and it still has some breakage cause of the intense itching in the crown area. Thank you for this post!!! About to call a dermatologist.

[@robertahosey9765]

Hi!!! I recently cut out my microlocks because I noticed thinning in my crown area. Well I thought I was fine. Then I had a barber shape it up and even out that’s when I saw the bald spots!!! I know it’s due to the microlocks maintenance being to tight. So I have an appt with my primary md to get a referral for dermatologist. I don’t want to use rogaine. I’m trying to use essential oils but I still want to get a diagnosis and a plan.

[@kuroe-chan5190]

Thanks for sharing! I was diagnosed with that in 2016 and lost my whole crown just about :( dr said it may not come back BuT it did! After a year I was able to grow it back. I also is the asthma/eczema duo. The itch was a night mare! I’m trying hard to get this hair back. It filled in but it’s just not retaining length but long as were not balding anymore

[@CCCANatural]

kuroe chin wow this is so great! Thanks for sharing! I am hopeful.

[@LeWilsonMusic]

You are blessed. The spots that I have never filled in and I have continuous breakage 😞. It’s depressing. I still have a good amount of hair so I just thank God for what I have and I thank Him as long as I have my hair. I’ve done steroids, medication, and PRP procedure (sigh) One thing I noticed which has been totally frustrating is that my crown grows so much better in its relaxed state because it’s straight and not getting tangled and isn’t as wire-y...yet I know relaxers are not good for my scalp. It’s a paradox...

[@CCCANatural]

ADM Hi there! Sounds like you know the relaxers aren’t the best route. The condition is inflammation of the scalp and hair follicles, a perm is a controlled chemical burn. The best example of my crown is a patch of new growth. It’s like 4 inches when the rest of my hair is like 12-16. I two strand twist my patch to keep it moisturized and just throw the rest of my hair in a bun 😩. I like to do flat twist to help my scalp to breathe and to get my medicine on without undoing my hair but when I’m busy a bun is my go to.

[@folashadeabayomi5285]

That is a blessing that it filled in

[@ATLchick16870]

This is what happen to me I just got diagnosed June 13 2019!!! Thank you for sharing God bless hang in there I’m in the journey together with you. I am going the natural way, I couldn’t do the shots in my head and the medicine was making me sick. I just gonna go the natural way and prayer

[@CCCANatural]

Mandy Lu hang in there! I agree the natural way defiantly helps; why couldn’t you get the shots? I almost didn’t either but research shows that the only way to nip it in the bud quickly but the hurt so bad 😣

[@ATLchick16870]

I just been drinking and putting aloe Vera juice/gel as well changing my diet. I did my research and my friend also had scaring alopecia and the shots never worked 😢. So expensive dealing with the dermatologist. They gave me pills and I read up that it also can cause hair-loss. So the western medicine for me I do not know if I can do. The cheapest and safest is the natural way. Girl I am learning. Yoga as well prayer just helps me a lot!

[@CCCANatural]

@@ATLchick16870 Do you find that the aloe vera juice helps?I use the aloe vera gel but primarily on my edges. I find that when I use it in my hair it doesnt mix well with other products .

[@ATLchick16870]

CCCA Natural late response sorry but yes drink it and also put it on your hair

[@ATLchick16870]

CCCA Natural kzbin.info/www/bejne/n6enqJ1rl5ufi6M Follow this! Her story amazing

[@vennissawatson3739]

omg I have been having this issue from high school. my hair looks just like yours. the centre of my scalp is very short and it itches like crazy. ik its not dirty and I don't have dandruff or anything like that so it was confusing. I am now in university and the condition hasn't change, jus combing my hair and I told my roommate what was happening and got the idea to look it up. honestly am kinda not surprised that its an actual condition probably that's why I was even scared to know . That treatment sounds not only unaffordable for me but also dreadful sigh. am even more confused now than before I knew. thank you though really appreciate your openness abt it.

[@CCCANatural]

vennissa watson I know I was surprised too! I also looked on KZbin and thought it was just breakage from having my hair in a bun. The itching is the biggest factor. I know their are some natural things you can do, essential oils etc. but I haven’t used them in isolation so I can’t tell if it would work without medicine. It might just take longer.

[@vennissawatson3739]

@@CCCANatural yes i thought it was bcz of doing buns too often. I will try the natural way bcz as i said it started from high school and i use castor oil and i hasnt change (neither grown nor fall off) so that is y i wasnt so desperate to seek answers.

[@CCCANatural]

vennissa watson I see! Keep researching & good luck; I’ll share any new findings during my journey

[@vennissawatson3739]

@@CCCANatural thank you. Ill look out

[@Lovesromantic22]

I have the same issue but i wear a lot of ponytails and puffs. I tried to tell the derm that but she just looked at my scalp and said its ccca without even testing me. when i first went natural my hair grew just fine there. I didnt start having issues with my crown until i started oiling my scalp and to be specific with castor oil. So something over time had caused my crown to shed down to the scalp so now theres hair there but its fuzzy like fresh new hair growth.i really dont think its alopecia i have, i noticed whenever i oil my scalp the oil irritates my scalp it gets itchy. So i think my scalp is inflamed from the constantly oiling my scalp, and wearing tight ponytails. the doctor said my hair follicles are in still there but she gave me medicine to get the inflammation down. I know u can get an inflamed scalp from the oil build up blocking your hair from prgoressing there. I stopped with the damn oiling of the scalp to give my scalp a break and my hair a break. Like how do u diagnose me with something without testing me. Im so annoyed.

[@CCCANatural]

Did your hair grow back after you stopped the oil and ponytails?

[@Lovesromantic22]

@@CCCANatural hi im on the treatment now and i noticed my hair is starting to grow back, i dont oil my scalp because it irritates it more. So i just leave it free. Im seeing progress but im inpatient and want it to geow in fast lol.

[@Lovesromantic22]

@@CCCANatural im on a 8 week treatment for topical steroid and antibiotics but i might stop them sooner.

[@tamiaprescott7434]

I literally have struggled with the same area on my scalp for yearssssss like 10+ years it all started after going to a salon getting my hair straightened as a child and the itching began. It’s my lower crown area so i always felt like idk what it could be 🥺 i haven’t seen a doctor the hair grows then if I’m not taking care of it it’ll itch and break off plus i have a habit of pulling strands of hair/cutting it when i see it’s super damaged

[@jheneale]

Thanks for sharing, it sounds like you may have a maintenance issue that is causing it to return; this might be combing, washing, or styling practices.

[@mbell8581]

This is why I’m bald now🥺😭 ok not bald but I had to cut my hair off again! I’ve been experiencing this for like 12 years! So annoying!!! I didn’t hear u say anything about breakage and shedding? Did you experience hair on the sink or in the shower. Or all over your hands?

[@CCCANatural]

Hi! At the time I was shedding balls of hair in the shower during wash day. I kept my hair in projective styles so I wasn’t shedding “daily” but it was excessive during wash day.

[@kierasasha2964]

Thanks for sharing... I went through the intense itching and burning after taking down some faux locs and i decided to cut all the relaxer out my hair to start over. The burning went on for about a week so then i decided to do apple cider washes and i can say it helped a lot. I could hear the vinegar sizzling. Bath then it was july 2021 its now jan 2022 and i have just 1 patch that is constantly sore. Even my hair has broken off in the area. Its shorter like yours. Im going to go back to the apple cider washes to see if it heals the area or not. No itch no burning just tender to touch. No more braids or ponytails for me. I give it the rest of month if its still in pain im going to the doctor.

[@shachede6828]

Err you’re meant to treat it early or you will be bald

[@ninawillow2429]

😭 I was hoping it was my eyedrops, Timolol. It can cause Alopecia in the crown area, so I was switched to a new medication. I still couldn't ignore this continuous itching. It's unbearable.

[@CCCANatural]

Nina Willow Hi Nina! My condition could be one potential cause, something similar can happen with a fungal infection of the scalp. I would get it checked out, that’s a simple fix. Have you tried anything? How long has it been?

[@ninawillow2429]

@@CCCANatural I'm definitely going to the dermatologist. My crown has been itchy and tender for a year or more. I'm not sure if it started before or after I started my medication. My hair strands have changed. They seem resistant to gel and thinner. I thoght I wasn't taking care of my hair properly. Then, I thought it was my thyroid.

[@CCCANatural]

Nina Willow I see, it’s good you got a head start. I think this is easily missed by many, but goodluck! I hope you find relief; keep me updated!

[@xXMoonlightQueridaXx]

Agreed. I have a plausible diagnosis of CCCA however, a biopsy will be needed to confirm it. My diagnosis is also very early. I have no spots, very minimal hairloss as well. But I have the annoying itchiness and burning feeling. Funnily though, I dont have the itchiness concentrated in the centre but there is a spot just above my ear that itches intensely after styling. My treatment now is: 6 weeks doxycycline 8 weeks steroid ointment 8 weeks nizoral 3 months antifungal shampoo. Questions: How long did your doctor recommend treatment ? Have you heard of the burnout of this condition Yes I am interesting in your progress as well. Please update

[@CCCANatural]

xXMoonlightQueridaXx thanks for sharing your story! My doctor recommended the steroid injections day one, and another in two months (July 19’) she did about 10 injections or so. She said that bc it’s so early that the injections should keep the inflammation at bay, and after July, I can come back for “flare ups” (itching etc.). I’m also using the topical steroid ointment prescribed every other day. She seems to be doing really conservative treatment plan for me. I’m hoping for results by my next appointment! Keep me updated with your process!

[@xXMoonlightQueridaXx]

@@CCCANatural How are your symptoms...it has been one week since I started...everything was going fine until I washed and detangle my hair..the symptoms returned....it was a lot less than before however the warm feeling is there....

[@CCCANatural]

xXMoonlightQueridaXx It’s been two weeks now, I have some itching but it’s not just in the crown and it’s like regular itching. The itching when I had the flare was really intense like I couldn’t stop scratching, now it’s like I itch every once in a while during the day. I don’t have that burning/ tenderness in the center when I wash my hair anymore but I went to part my hair the other day it was tender in the center so I don’t part it any more. Just doing buns now and keeping the middle moisturized and protected.

[@xXMoonlightQueridaXx]

@@CCCANatural Alright let's share weekly updates. I am just into my second week...have the minor itch here and there and a few biting...but definitely not as bad as when the flare started and clarification...washing doesn't flare it..but detangling does..I think I will start to put the creams on first along with taking the antibiotic before styling. I have added cod liver oil to my diet just to assist with lowering inflammation. Let's get through this together. oh and my name is Janielle, teacher of Mathematics and aspiring neuroscientist

[@CCCANatural]

xXMoonlightQueridaXx I’ve been really nervous to detangle my hair. I was washing my hair everyday last week bc I was on vacation and swimming a lot at the beach but I deep conditioned my hair everyday too for 30 min. I feel like the salt water helped with the itchiness. But I’m home now and I usually wash once a week. I’ve just been doing buns, I added turmeric pills (organic) to my diet to help with the inflammation, I plan on finger detangling only (thought of that today) just getting rid of combing to preserve what I have left.

[@latashaclark3247]

Hey, I've been suffering with that area for years. But it's never been rapid or expands out or itchy or burning. I'm confused 🥺

[@CCCANatural]

LaTasha Clark hey! Do you have any bald spots there? If not you might just have crown breakage from hair manipulation for example wearing buns or tight ponytails

[@latashaclark3247]

No bald spots. Just a nickle or quarter size patch I'd call it. The hair around the patch is a little short aswell. The rest of my hair has flourished ironically. I will confess that when I'm nervous I pick and pull that area but I've stopped over the years. Theres no shiny area of hair loss more like peach fuzz.

[@latashaclark3247]

I may just go to the doc to check...also stop picking and pulling. Idk why I pick and pull when I'm anxious and nervous.

[@CCCANatural]

LaTasha Clark I think that’s a good idea. If you think it’s more related to anxiety I would handle that first; your problem just might go away. Check with your primary care doctor before you see the dermatologist.

[@latashaclark3247]

Thankyou!

[@nataliaibarra2232]

Thank you bc I was doing my daughter hair and she has all these symptoms imma take her the doc!

[@jlewis7972]

Thank you for sharing I just wanna scream… my hair lose is rapidly happening, from the crown outward 😢

[@CCCANatural]

Thank you! I am so sorry to hear 💔 the steroid injections can slow things down

[@pamelanyagumbo31]

Oh my God um my hair is breaking in the middle n itching as well n it started when I relaxed my hair ....what do I do

[@jhenr5204]

Hi Pamela, sorry for the late reply. It is best if you avoid adding chemicals to your scalp if you’re having issues with itching and breaking. Have you seen a dermatologist?

[@Leah.Franklin]

What are the names of the dermatologist that you found in the dmDC area?

[@CCCANatural]

Hi I don’t live in DC. Please email me if you’re interested in coming to Baltimore County. [e-mail]

[@IAMSHAKITAD]

Do you mind sharing your dermatologist info I’m in the DC area

[@carlawomack6985]

I really enjoyed your video I waited much longer than you to seek a doctor. She is out of state very expensive. Have you every heard of Vitalize?

[@CCCANatural]

Carla Womack Hi there! I have not heard about it, tell me more!

[@carlawomack6985]

Her name is Doctor Roberts Im in Mi and she is CA so we meet on Facetime I would love to tell you more about her and see what your thoughts are

[@CCCANatural]

Carla Womack sure!, shoot me an email with your contact preference. [e-mail]

[@kaybailey7710]

That's EXACTLY how mine looked. Breakage/new growthish, roughly a golf ball sized area. It started w tingling as itching. I have growth, but I'm,super paranoid about breakage, hair health and protecting the area. Best wishes my sister in ur hair journey

[@CCCANatural]

Kay Bailey thank you! How are you treating yours?

[@kaybailey7710]

@@CCCANatural to be honest: im not. Im currently natural, trying to meander thru the product journey. From time to time I have mild tingling/itching, but no breakage. No substantial growth either, but it's fully covered. I'm using regular products, and apply a little heavier in the crown area.

[@kaybailey7710]

@@CCCANatural I want to treat it to keep the growth I have, but im scared of all of the 'cure alls' out here: Listerine rinse regiment. The 'ease of sea breeze' regiment. Hemp..you NAAME it!

[@kaybailey7710]

@@CCCANatural so as of right now, strong prayer, extra product and protective styling (A big UNICORN plat in that area) and a small amount of coconut oil to stop itching. I am planning on your recommendation of trying the product u mentioned

[@CCCANatural]

Kay Bailey okay sounds great! Let me know what you think. I’m going to my derm on Sep. 1. I’ll make a video update that should be very interesting! Be sure to subscribe & keep me updated!

[@simnoneburts3004]

I'm struggling so bad with my hair I don't have money to get any treatment I'm depressed and my confidence is gone my hair is itching so bad I'm trying different types of oil and nothing is helping me I wish someone can help me I was diagnosed with Lupus after losing my daughter and I'm only seeing a doctor in June mine is so bad I hope they can help me.

[@CCCANatural]

Simnone Burts Hi Simnone, I’m really sorry to hear about your loss. I can’t imagine the stress you are under. I hope you are able to get it checked out soon. In the mean time have you tried any shampoos that can calm the itching down?

[@integritireeves6028]

Thank you so much for your video! Would you be willing to share the physician that diagnosed you? I’m also in the dc area

[@CCCANatural]

Integriti Reeves I’m glad to hear! Dr. Aguh - Hopkins Columbia location

[@integritireeves6028]

CCCA Natural Thank you so much!!! I hope I can get an appointment!

[@CCCANatural]

Integriti Reeves no prob! She’s usually booked up but it’s worth the wait! She’s great and this is her specialty!

[@jkgolden6143]

Thanks for this!

[@sabrinahardy1974]

I’m also in the dmv area would you be willing to share your doctors info? I think I may be experiencing the same thing. Thanks

[@CCCANatural]

Sabrina Hardy sure, Dr. Aguh Johns Hopkins Columbia.

[@rachelstrong9502]

I need to see a dermatologist asap my whole crown just start breaking over the last 6 months I thought it was just stress but listening to you I think I need help i just cried 😕😢💔my eyes out

[@CCCANatural]

Rachel Strong stress was definitely my main source for my outbreak. This pandemic doesn’t help. Get the help you need ASAP! Let me know how it goes

[@rachelstrong9502]

@@CCCANatural should I perm my hair at all?

[@CCCANatural]

Rachel Strong I wouldn’t, it could be detrimental if you have a scalp problem. My dermatologist told me it great that I’m natural now bc going natural would have been a part of the treatment.

[@rachelstrong9502]

@@CCCANatural thank you for the advice🙏

[@kymeishgaston7799]

Great video.

[@CCCANatural]

Thank you for your support!

[@alexxdaye1]

Do you have a 2021 update as to your current condition? Thanks for the video! We're all in this together Sis!

[@CCCANatural]

Working on getting the new video up by Friday! Thank you for your support! ❤️

[@CCCANatural]

3/2021 update kzbin.info/www/bejne/jJuoZ4KujKt9jKM

[@belindaking3136]

What is the name of the steroid shot? I was told Kenalog steroid for my CCCA.

[@CCCANatural]

Belinda King hi there! Kenalog is the other name for it.

[@latashaclark3247]

Is treatment safe?

[@CCCANatural]

LaTasha Clark yes! No true side effects other than tenderness for a day or so

[@latashaclark3247]

Cool

[@mrsshahidah]

I get Kenalog injections and they leave dents in my scalp.

[@CCCANatural]

Shahidah M. Yeah that’s a side effect if they inject too much volume and/or too frequent. My Derm did it spaced out. 4weeks, 6 weeks, 8 weeks and that was it