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  • Central Centrifugal Cicatricial Alopecia

     

    The August issue of Essence discusses hair loss at length. It also gives a list of doctors/specialist(pg 34) and treatment options (pg 36).

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    hey delta,

    hang in there. I'm in semi-relapse. I haven't had any new hair loss, but I keep getting an itching/slightly irriated feeling (not the burning itching that comes with the hair loss). My derm still has me on topical steriods and has now given some sort of prescription shampoo.

    It's frustrating but what are you going to do. I'm strting to get concerned about using the steriod cream for this long time, but what is the alternative? degenerative baldness?

    I am starting to wonder what role diet might be playing in this or general health???

    I can see where my hair texture and growth and strength is noticeably differnt in the affected and non-affected areas. It's kind of disheartening.....

    As far as covering up the thinning, depending or where it is, I brought a clip on afro puff hair piece that matches my hair exactly. I could then where my hair pulled back and used the puff the cover up the thin area if I wanted a change from the scarf routine.

    I hope someone figures out a cause for this stuff.

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    You said you've added msn to your hair, what is that?

    So Far So Good!!!* Rather than have the medical/doctor...

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    I am so glad to have found this site. Thank you Valuetruth for sending me here. I'm kind of between insurance plans right not, so for the mean time I will try to follow Nubian's regimen. I prefer the most natural treatment anyway. And I've been through that deal with dermatologists that accuse you of doing things to your hair and skin that you told them repeatedly you don't do. My most recent breakage was in lat nov early dec. I was stressed about finishing the semester. Stress seems to precipitate the breakage at the crown of my head. I have noticed that I have a smaller area of breakage now that I stopped using heat on my hair (about a year ago) I haven't noticed a difference in my hair when it grows back. Hopefully this site will help me treat the problem. I've had it for a while (I think I said about 9 years in my other post). I had just attributed it to a bad chemical fire cream and permanent damage from it. It just became so frustrating especially when I went natural when the hair continued to break and I thought relaxing was the problem. I'm sure it was in part. I have a habit of hitting my scalp in that area, when the cycle starts up. I realized it was providing circulation to that area that had become so tight and painful. I will try the stimulaitng e.o.s,acv rinses, nightly scalp massage and maybe the MSN if I can find more about it, and let you all know. Thanks so much to every one who posted on this subject.

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    Ladies,

    Here is my update: I was diagnosed with severe anemia back in November 2005. So severe that I required a blood transfusion. It is possible that my hair problem was aggravated by the lack of iron in my system. I believe that i have been anemic for sometime, but was diagnosed because no one ever thought to to do a complete blood count. At any rate I was diagnosed with CCCA in 2003.

    The spot in my head is down to a stubble, i can not grab any hair there at all. it appears that the surrounding area is starting to thin and break off. this is new because I was only concerned with that one spot. I have an appointment with a dermatologist on thursday. I am not looking forward to it because I will probably know more about CCCA than she will.

    I have been doing more research, and found an article about a study that was being done by Dr. Callendar and Pantene on CCCA. The results of the study were to be completed in February and presented at a dermatology conference in March.

    Anyone familiar with this study, take part in it or have any information? I am in Ohio and would like to know if there are any african-american dermatologists in Cincinnati, Cleveland or Columbus. I have done a search but come up with nothing.

    bump

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    Update from Dermatology appointment:

    I was prescribed a lotion, shampoo, biotin, a pill for itching, antibotics in case there is a bacterial infections and rogain for women. She did not want to do a biopsy or steriods at this point. She said my scalp and hair was healthy because her pull test did not produce hair coming out from the root. Frankly I don't think any of this stuff is going to work

    more than I had the first time I saw the derm back in 2003. She seemed to think that I did not have CCCA because I am not completely bald in that spot. it is down to a stubble and looks like the thinning and breakage is spreading

    so i will begin taking pictures and document growth (if any) with this treatment.

    hopefully together we can figure this thing out

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    Here is the list of prescriptions i got today:
    Women's rogaine (uggh!)
    Ketoconazole (antifungal shampoo)
    Luxiq (a foam, not sure what to do with it)
    Loprox Shampoo
    Cutivate (a lotion)

    this is just too much

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    Women's rogaine (uggh!)Ketoconazole (antifungal shampoo)Luxiq (a foam, not sure what...

    Have you tried any natural remedies. I have the same problem (see my previous post). I haven't been to the derm yet. Not sure I will go. Nubian seems to be having some success w/ MSM (a sulphur supplement) rosemary, teat tree and some thing called surge. I got everything but surge from that list the other day. I'll see how it goes. Maybe you should consider a more natural path first. I would check the effects that medication has on other body systems before starting it. Good luck.

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    klyna,

    I have reduced the amount of products i use. I wash once a week with a tea tree shampoo (diluted) and deep condition with avocado oil or coconut oil under a heated conditioning cap. These two oils don't make my scalp itch and the heat soothes my scalp for at least a day or two. I tried the massage with rosemary and sage in olive oil but that just made my scalp itch more. Recently I bought Shulta's rhassoul clay condition hearts and that treatement also relieved the itching for a day or two.

    Vitamin/supplements include fish oil, vitamin e, msm, iron pills (anemic) and a multivitamin.

    we will see in a few months if any of these is working

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    First, let me start by saying this site/forum is a GOD send. I have been looking for information on scarring alopecia since the summer of 04 (when I was diagnosed). As my grandmother puts it "Being Baldheaded Ain't No Fun"!

    My bald spot started out small in 00-01. While being station in Korea my scalp started to itch really bad at night. Of course I scratched it and worst of all I still got my perms. It's been down hill every since. Jan 03 was my last perm, my hair was great while I was going through the transition phase. It was amazingly thick and it looked healthy to me. In 04 I started to get some quick weaves (glued in) they were quick and easy. By April 04, I took out my weave and on my crown was a strip of hair. About 15 strands! Every since I have been wearing wigs.

    I was told that my hair would never grow back and the results from my biopsy stated that my hair follicles were dead or something to that effect. I have seen some significant hair growth, because now I have a full hairline (actually it's an outline of a full one) I used to have a half one. Anyways, the problem that I'm having now is that my scalp is extremely DRY. I've never seen this much dandruff, it's like I've been in a snow globe after I comb my hair.

    If any of you have any remedies for EXTREME dandruff I am all ears!

    Until Next Time

    saamc

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    sxcsaam

    are you a soldier?.

    I was in the army when this thing started.oddly enough it was the same summer that we switched from the bdu caps to the berets. You got a lot more info from the military derm than i did, because i did not get a biopsy.

    nubian indigo posted some good info on how she treats her condition. dealing with this condition is tough because what works for one person will not work for the other.

    deep conditioning with avocado oil or coconut oil helps my dry scalp for a moment.

    i post results after i use the shampoo my derm prescribed

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    Yeah I'm in the Air Force...we were ball caps with our squadron emblem so they're much better than the berets. As far as my dermatologist, I think she did the biopsy because she didn't have a clue as to what to do about my infamous bald spot. Luckily here in Iceland my doctor is AWESOME. He doesn't have a clue either but he is really trying. So I can say that I really lucked out with him.

    Thanks for the info, I'll check nubian indibo's posts...

    Until Next Time

    saamc

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    saamc,
    You are very lucky!!! I was diagnosed with CCCA years ago (like 99' or 00'). The derm (military derm) gave me no recourse. I was never made aware that there were steps to take to slow the spread of the balding. After years of research (Thanks in large part to the women on this site)...I went to my PCM and derm and basically demanded tests. I'm so far behind the curve in efforts to salvage my hair. Back when I was told that this what was happening to the crown of my head, the only thing that was said was that I shouldn't use chemicals and it wouldn't grow back. I wasn't told that without attention, it would spread . I am now in the process of having tests done for PCOS. I'm sorry, I know I went off topic, but I've been feeling very isolated in dealing with the unique issues of this condition in conjunction with military regulations and deployment situations...etc. {sigh}

    I'm sorry, I don't have any info for the dandruff. Maybe a sulfur product (like Glovers' or Sulfur . Sulfur products are supposed to be good for dandruff problems. Other than that, maybe scalp messages with shea butter, EVOO, VCO, or EPO may help moisturize your scalp, help with circulation, and hopefully calm some of the itching. HTH

    PM me if you would like to network, share, vent your experiences/useful resources dealing with CCCA in the military.

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    I'm curious as to whether most people in this post are experiencing clean bald spots or if the hair is just breaking to a very short length? I've had my condition since about 96? and the hair has never completely fallen out. How long did anyone who has CCA here notice the pattern before they had an episode of actual baldness?

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    I have to say, by chance, I decided to check on hair loss this afternoon and am glad I did. I have a very similar story to everyone else that has posted. I think stress has alot to do with it, but I also think it is GENETIC.

    My maternal grandmother, mother, and female maternal cousins all have the same problem. Mind you my grandmother is 85, mother 66, and cousins are 40ish so the types of hair care products and styling techniques have evolved greatly since this time, so I have hard time pinning the whole problem on that. I was definently a perm child. I got one faithfully up until the age of 24. Then my hair really started breaking off at the crown. It started small and progressively got larger in diameter. It was the size of my palm. I began wearing sewn in weaves and decided to not perm any more. Well christmas of 04, I wanted to wear a ponytail and my stylist needed to straighten the ish outta my hair with a burning chemical for that. When she finished I found my hair was down to the middle of my back. I couldn't stand it!!! My hair had never been that long in my life. I took the ponytail out just so I could see and touch my hair.... In a matter of three weeks my spot reappeared. My hair was falling out just at the point of new growth. That section of hair would not accept the perm. Thats when I finally decided no more.

    But as it relates to my family especially my mother's immediate side, they all have it. My grandma, mother, and one cousin are all natural. The other cousin still perms, but she is stylist by trade and she doesn't have it as bad.

    I also went to a derm and was told about the too tight braiding and other techniques we do to our hair. She gave me a steroid foam and a prescription for Appearex, a biotin supplement. I didnt care for the steroid for the itching, but I liked the biotin. If nothing else it "appears to make my hair stronger". So I would recommend it. The pharmacy has to special order it or you can order online. The last time I got it for $10.

    Let me end by saying Im glad to have found this thread. I can relate to all of the trials and tribulations. I thought I was crazy for having this burning itch sensation in one spot on my scalp.

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    I'm going to try the Appearex. I am using MSM right now and my hair seems to be growing faster except the spot that I'm actually concerned about. I don't know if I'll take both at the same time. My spot is growing back now, as it ususally does. No thinning. Just a short section. It a real problem for styling though because it is at my crown. I'm reluctant to go to a derm b/c I know they'll tell me to do something I don't want to do or am scared to do. Right not I'll keep using my E.O.s, massaging, keeping it moist and try the biotin and/or MSM, and prayer. The fact that the hair grows back and actually catches up with the rest of my hair is very frustrating. Only because I know it will break without any warning. Hopefully this time will be different.
    Blessings to all of those experiencing the same.
    Peace.

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    Ok guys,

    I have realized for about 5 years that the top of my hair was thinning out really bad. I went the derm in Nov. because I started to get the bumps. She gave me some topical meds for the bumbs. Of course, there was one bump that did not want to go away, and I have received the steroid injection. The bump finally went away. After that, I went back to get a biopsy done (which is what I wanted to have in the first place). The results came back today of having the "CCA" like most people on this site. She told me that it is from traction and a lot of heat to the hair and that since the follicles are damaged, I would not have anymore hair growth . Granted, when I was on creamy crack, I did have a few weaves put in, braids/extensions and have also used to have the straight look where the whole head is bumped ever so slightly with the flat flaming hot tool of hair torture and I would used to bump the hair on the crown of my head, giving it more volume. Anyway, I am a little depressed about this right now. I have started using JASON hair products (all natural) and they have a special line just for thining hair. I have only used it for a week and a half - the shampoo, conditioner, and hair serum. I must say that it does make my hair stronger. I will wait about another month or so to see if any hair will grow back. I am really trying to have high hopes despite what the Dr. said. I have changed my diet, drinking plenty of water and exercising a whole lot.

    Sorry for long message. I just had to let it out

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    I have realized for about 5 years that the top...

    was your doc talking abot the hairmax lasercomb one of the local news channel did a trial with three products and three different men and the one with extreme growth was the man that used the laser comb. they used such topicals as minoxidal and another topical. the lasercomb was shown to be the only one that was seen to show thick results within at least a month. the bad thing as with any product you have to continually use it. and the price is just to much.

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    well had to type this again hope it works did you get a second opinion and were they aware of our hair i've had the same problem with stress and my inmmune let alone creamy crack days i had rapid major thinning hair fall andd breakage. it has finaly slowed after three years going through some things now and i dont want another flare up. i've only been able to wear gathered styles such as ponies and puffs but i cant wear twist or box b to save my live have youheard of this product called scalpmed.com take a look let me know what you think sister devine and another sister has had major hair growth but i haven't seen that they were fda approved. the research i've done on emu oil is known to awaken thicken your scalp and gro your hair this i com to believe cause i put a lil on my eyelids and woke up lookin like a guppy the next morning! let me know what you think, hth a lil.

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    Nubian Indigo - all that research...I am speechless! Thank you...

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    any updates anyone? i have been having a serious episode lately...

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    My doctor has not mentioned the laser comb. I have heard about it though. I did not know that it worked.

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    Ladies,

    Updating on my progress: After three derms, a ton of prescriptions,lots of research,and this board my scalp and I have come to a conclusion

    My scalp cannot tolerate anything on it. No oils of any kind(sweet almond, jojoba, olive, coconut, papaya, watermelon, marula)no creams, no sprays, no rogaine, no cortosteriods, no foams, no herbal rinses, no ACV. NADA, NADA, NADA.

    Everything makes my scalp (in the spot that has breakage and stunted growth) itch like crazy. My hair has been in cornrows for about two weeks, I have been rinsing my head every three days and the itching has almost disappeared. I have started using a little brown sugar to scrub my scalp in the short spot. Even conditioner washing makes the itching flare up, I have been using suave moisture milks passion fruit smoothie.

    I have dry scalp and hair that is thirsty, now I have to fiqure out what will bring moisture to my scalp and hair without the itching...

    any suggestions?

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    I just joined; I hope you get this message. Dr. Earl Walker is an African- American dermatologist in Columbus.Here is my update: I was diagnosed with severe anemia...

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    I was diagnosed with Central centrifugal alopecia 6-months ago. Can the condition affect the entire scalp? Or, is it just confined to the crown? Right now I am able to wear ponytails. does anyone have experience with total and complete hair loss? I agree that stress plays a large part with the condition. When the condition started i was experiencing one of the most stressful events in my life.

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    thanks, looking him up now

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    Hi, new to this site. Now I do not feel so alone. I have experienced many of the same symptoms I have read here! However, I have a unique addition of information. For me, about ten years ago I noticed my hair thinning and breakage was attributed directly to my consumption of processed corn products, snacks such as nacho chips, corn curls, corn chips, etc. Also, I stopped eating cornbread and any other processed corn products and I noticed a significant decrease in my hair loss problem. Maybe just coincidental, but I thought it might be worth sharing with others. Ladies stay strong and good health to all.

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    Greetings everyone,

    I have been dealing with hair loss for approximately 4 years...at least that's how long I've felt the pain. All of the doctor's that I went to see told me that I had a good amount of hair and kind of dismissed me. I kept food journals, had my thyroid checked, tested for syphilis and the list goes on. Finally a couple of years ago I was looking on line for the symptoms that I was experiencing and found CCCA. I presented it to my doctor but was dismissed. Granted I was in grad school and was seeing the school physician, but, because my hair was really thick with no large spots of bald spots I was not taken seriously.

    About six months ago, I joined the Hair Club and started using Minoxidil and their shampoos and vitamins. Well, I have experienced a little regrowth at my temples but my overall head of hair has thinned out drastically. I just went in for my six-month evaluation and they told me they have never seen anything like my hair, meaning the pain and how I can pinpoint where my hair is going to thin out next. They basically told me that there is nothing they can do. I tried and wasted $1500.00 in the process. I have also been seeing a dermatologist and he has been only slightly helpful. Oh, I graduated and I now have insurance.

    I have an appointment with the dermatologist today and ya'll better believe that I have taken notes from all of your postings and I'm going to ask him why these things haven't been discussed with me. I have never had a scalp biopsy or anything prescribed except that Luxiq foam. I'm at a point in my life where I have to begin to demand that they take an interest in my case. All of the females in my family have hairloss, but there's was rapid due to dying and perming and things. I'v been natural for over six years now. I plan to keep using the Minoxidil for now because I do feel that it has helped a bit. I've tried some of the essential oils and they irritated my scalp. So, I'll keep you posted.

    Thank ya'll for your postings...it's important that we support each other through this because I know I feel really alone. And because I still have a lot of hair nobody really takes me seriously.

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    I really do not think it's coincidental at all. You may have and allergy to corn. I think it's really great that you were able to figure it out. I was thinking about a detox diet before I read your post. I think it would be good for me to detox and then slowly add things back into my diet and watch the affects of certain foods. Easier said then done, b/c a sister loves to eat.

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