Guest Blogger: My Journey with CCCA Alopecia and My Recovery (Part 2)

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Continuing the Hair Loss series, this post is by blogger Ronnie of Sankofa Power who wrote of her experience with CCCA Alopecia. This is Part 2 of her journey to recovery and she mentions a hair growth treatment she used from essential oils.


In my previous post, I spoke about how I came to discover that I had alopecia, specifically Central Centrifugal Cicatricial Alopecia (CCCA)- a mouthful! I discovered my condition during a visit to my dermatologist at the Roosevelt Skin of Color Center.

This was after I tried unsuccessfully to tackle the issue with products from renowned European companies such as Rene Furterer, Klorane and Phystospecific lines. I was already primed from my childhood to run to these brands. Growing up in Haiti, my older sisters were avid users of Rene Furterer products and revered any hair product from European laboratories. Rene Furterer Ampoules were very popular in Haiti. My sisters used them to promote hair growth and scalp health. I bought some of those products online and also used the opportunities during my visits to Europe to stock up.  I am sure these products are of the highest quality, but they just weren’t the solution for my specific problem.

On to my dermatologist, his first order of business was to take a picture of my crown and keep it in my chart to track progress. His first “prescription” was for me to stop anything that I was doing to stress my follicles. In my case, there wasn’t much, I had cut my locs and I had a short fro.  The directions are to stop chemical treatments, tight braiding, weaving, chemical coloring etc. The reason for this is to eliminate any hair practice that may be negating the treatment or exacerbating your condition.  At that moment I realized the magnitude of addressing alopecia medically.When I later spoke to other women experiencing alopecia, especially women of color, this was the biggest barrier to seeking treatment.  The majority of women are not ready to really stop weaving, braiding or processing their hair. The sad reality is, unless you were already comfortable to wearing your hair in its natural state with no enhancement or chemical treatment, this first direction of your dermatologist can be a deal breaker.

He then prescribed  a steroid cream that I had to rub on my scalp every 2 days, alternate days with the Rogaine, and an oral antibiotic/anti-inflammatory pill. I made a vow to follow his treatment for a full year. I would go to his office every 3 months to track progress. I stuck to his program, went for my visits and he did see progress on a reduction of the bald spot at my crown. However, I wasn’t comfortable with the idea of being on antibiotics for that long as it has a tendency to wreck your gut flora, no matter how much yogurt you eat or probiotic pills you take. I also stopped the Rogaine after a few months since it was giving me way too much “baby hair”. Even though I only rubbed the Rogaine on my crown, and made sure that it didn’t leak anywhere else, fine hairs started growing all around my forehead and temples. No Thanks!!

Another Rogaine baby hair shot, US Open 2013
I was a trooper, I kept the steroid and pill treatments up for 9 months.  I felt I had reached a plateau. Although I made some progress, my hair was still dry and brittle and the bald spot was still there. I wanted to switch to more natural options. I credit Dr. Alexis for jump starting me on the path to recovery, for his diagnosis, and direction. But you know me, I had to go to my kitchen, to my roots and heal my body naturally.

Using the diagnosis that CCCA is an inflammation of the follicles, I extrapolated this to mean that I should reduce inflammation in my body as a whole. I know most reading this are like, WHAT OIL did you use????  hehe, I will get to it. Most women dealing with alopecia would only want to hear about the “miracle product” to rub on their scalp so they could be Rapunzel next month ( Ode to my LS who loves to use the word Rapunzel). I understand that, but I wanted to start thinking differently.

Often a diagnosis of inflammation in one part of your body is your chance at preventing inflammation to pop up as another disease in another organ.  Besides a diet hight in fruits and vegetables, some spices that can help reduce inflammation internally are ginger, cayenne pepper ( hot pepper in general), garlic, and turmeric/cumin/curcumin. I started taking curcumin, garlic and turmeric supplements in pill form. I also invested in a pill called Zyflamend which is a proprietary blend containing the most popular natural anti-inflammatory ingredients listed above. This pill is popular amongst those who suffer from Arthritis.

In addition to internally attacking my problem, I also did research to create a hair oil, which I would apply with the same frequency of the steroid cream to treat the inflammation topically. I came up with a mixture of half jojoba and half cold-pressed castor oil mixed with grapefruit and peppermint essential oils.  Jojoba oil, is one of the lightest carrier oils. It mimics the sebum that our hair and skin naturally produces.  It is one of the most absorbent hair oils. I added castor oil because of my coarse texture, castor oil is a wonderful emollient. The grapefruit oil acts as an antinflammatory and the peppermint stimulates the follicles to promote growth. Although many essential oils are anti-inflammatory, I wanted to find a mix that smelled really nice, clean and fresh, thus why I settled on grapefruit and peppermint.

Every two days, I would carefully part my hair and massage the oil into my entire scalp, with extra focus on the bald spots. If you have thinner hair or wear it straight, you can omit the castor ( heavier) oil and just double the jojoba as it is a light oil. The medicinal effects comes mostly from the grapefruit and peppermint essential oils.

Essential oils to reduce scalp inflammation and stimulate growth

I also cowash my hair weekly, sometimes twice a week.  Based on how my hair feels, I know when I need to do a clarifying shampoo to remove buildup. Before washing my hair, I  would also do a prewash massage, similar to the one described by THE hair guru Merary Soto at ManeConcern Pre-wash . The key to takeaway from this, which is also Merary’s advice, is consistency. It’s not so much which oil you use, as there are many essential oils with similar effects, it’s the consistency of your scalp massages that will yield the results.

I have to say, focusing on the health of my scalp externally and reducing inflammation in my body as a whole has gotten my hair in the best health that it can be right now. My goal was to stop the problem from getting worse and be able rock a short healthy fro. Anyone who knows me knows how sad I would be if I had to wear hair pieces or a wig. In fact, I have already mentally come to terms with the fact that if my problem gets worse that I will rock a baldie before I have to wear a wig.  So far I have succeeded and for that I am grateful!

My hope is for whoever is reading this and dealing with any form of alopecia, to know that it is more common than you think, it happens to women of all ethnicities , whether you alter your hair or not. In the same vein of how common this condition is,  there are  pharmaceutical and natural treatments available to you.
November 2014 selfie:-)
In Health and Presence of Mind

Ronnie_Deco

More: Hair Loss Series Part 1 - CCCA Alopecia

18 comments:

  1. Thank you so much for sharing your story. Your results are amazing. I had a similar situation with a traction alopecia diagnosis after 14 years of locs. I was not drinking my water or taking my vitamins, I think those were also culprits. I cut my locs off and started to wearing two strand twists as soon as I could. It's not nearly as thick as it was before locs and it grows slowly, but it does grow. Also it was like a different texture--scab hair I believe which I have to grow out as well. I also found that the scalp massages really help. I've been doing them 2 times a day for the last 2 years. I used JBCO for the first 18 months and now I use commercial growth products like Dr. Miracles. Slowly the beautiful hair I had before the locs (my locs were beautiful too until they began to thin) is coming back to me.

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    1. Wow Leah, thank you so much for taking the time to share your story! I know that it is a hidden secret that women with natural hair have traction alopecia. I am glad to hear that you are on the way to recovery. Thank you for sharing what you did (and are doing) to help regrow your hair. Also check out the resources we have on LNS about alopecia and regrowth by using the search bar.

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  2. Thank you for sharing it was so uplifting to hear your experience. I want to try your oil regime. How many drops of each oil did you use?

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    1. Hi! Thank you for your question. I would suggest 8-10 drops of each essential oil diluted in 3 or more tablespoons of a carrier oil. You should start with a low amount of 8 drops and increase to 10 if there is no skin irritation. Since this is a post by a Guest blogger, I am not sure how many drops of each she used. I reached out to her and asked but have not received further comment. The above amount is a suggestion. To learn about carrier oils, type "carrier oil" into our search bar. Thanks!

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  3. Hi. Thank you so much for your blog post. For the last 4 years, I have been suffering from hair loss - at the front of my head (temples) and in the center of scalp. During this time, I suffered from the tingling, itchiness and sensitivity of my scalp, never quite understanding what was going on. I figured out I had traction alopecia in front but couldn't figure out what was happening with the hair loss on my crown. I went to see a dermatologist who put me on minoxidil but never really explained what was going on with my hair. It was only in a recent consultation (after 9 months of minoxidil) and seeing no improvement on the center of my scalp - it actually seems to be getting worse - that the consultant told me I had CCCA. I felt devastated as she explained that it may never improve and there is no real cure for it.
    I came across your story in my search for answers. Thank you for telling your story. It is good to know that others have experienced this and have found ways to heal their bodies. I completely agree with your holistic approach. I have tried all the oils, potions, creams to no avail. Maybe it is time to deal with the internal inflammation.

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    1. Hello - thank you for being brave and sharing your story. I decided to do this research to help others close to me going through CCCA or traction alopecia. Ronnie of Sankofa Power is the writer and guest blogger of this post. I would suggest stopping any hair care practices that can cause further damage or create irritation. You can change your diet as well to reduce inflammation and regrow your hair. One of things I suggest is Calendula Tea. You can read about more treatments here: http://www.lovenaturalsunshine.com/2015/01/ccca-alopecia-hair-loss-series-part-1.html
      Let me know if you need more help!

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    2. Hello, thank you for sharing your story. I would like to strongly discourage anyone from ever using minoxidil to treat their hair loss. I suddenly developed a small bald patch in the middle of my head and the doc recommended minoxidil! it caused me more massive hair loss, even caused a huge rash on my face and made my face swollen, plus caused a terrible itching and burning sensation on my scalp. I went from one bald patch in the middle to another terrible patch on the side of my head which made it impossible to trim my hair totally so i now have to wear a wig. I used to use natural products to wash and treat my hair, never wore weaves, glued my hair etc, and relaxed my hair twice a year, so imagine the disappointment at being diagnosed with CCCA. I have been on treatment for one year now. The inflammation seems to have stopped, but no hair has grown back. Thanks to this page i am picking some tips on natural products to use.

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  4. Thank you for sharing your story. After years of dealing with a dry, itchy scalp that I believed to the winter dryness, I was diagnosed last summer with ccca. I'm blessed to live in Kc that has an amazing Harvard Med graduate dermatologist that specializes in hair loss. Specifically African American hair loss. I have been doing kenalog shots and taking antibiotics along with a diuretic. The itchiness and tingling has been reduced on about 99 percent of my scalp. However, I'm left with severe breakage on my crown. It has gotten to the point where it's nearly impossible for my to have any hairstyle. I'm worried that this loss is permanent but my doctor is optimistic. I was lucky to find about about this condition at 29. I'm eager to try your regimen to promote hair regrowth. Again, thank you for sharing!

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    1. Hi Ashleigh - thank you for sharing. Along with the regimen mentioned by the guest blogger Ronnie in this article, I would suggest using a calendula balm to ease the skin break outs. Just make sure the product is organic or natural calendula balm. I hope this helps!

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  5. Many thanks for the post. I have been silently struggling with hair loss for several years, too embarrassed to accept the truth and discuss my concerns with others.

    I noticed hair loss and breakage in my crown and thought it was caused by wearing braids and my habit of not covering my hair while sleeping. My hair initially thinned, just at the crown of my head, then I developed a small bald spot. This has grown significantly and my dermatologist recently diagnosed me with ccca. I was devastated to hear there was no cure or confirmed cause. She suggested doing a biopsy, to confirm the condition. In the meantime I am doing shots.

    Needless to say I was elated to stumble upon your site and to hear of natural treatments.
    I am trying them all, the balm, tea, oil massages, and herbal vitamin supplements. Similar to the guest blogger Ronnie, I would prefer not to wear hair pieces or a wig. However, I guess I need to come to terms with my styling options.

    Thanks again for sharing. After reading the post and comments, I am feeling a new sense of hope.

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    1. Thank you for bravely sharing. I am glad that the information found here was able to help you in some way! I would look into a silk or satin pillowcase to sleep on instead of a hair bonnet. That way there is no strain on your edges. Look for natural, non-chemical laden hair products that contain ingredients that stop inflammation. Read this blog post as well. http://www.lovenaturalsunshine.com/2015/01/ccca-alopecia-hair-loss-series-part-1.html

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  6. Good information.. I'm battling it

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  7. I am 49 years old and my Beautician noticed a thin spot about the size of a dime to start 21 years ago. Because I had plenty of hair and it wasn't really noticeable. As it progressed I went to a Dermatologist who told me they didn't specialize in African American hair and suggested I find someone who did. Off and on since then I have visited one Dermatologist after the other no one wanting to do a biopsy. Now a 1/3 of my head is affected and I finally got another appointment with someone who specializes in African American Hair (although it's not just an African American issues). I made the appt in October 2017 and the quickest they could see me is Mar 2018. I have all they symptoms (itching, pain, soreness my scalp at times feels hot to the touch I'm assuming that's the inflammation). I was never one to get a lot of weaves or hair braiding done. I wear my hair natural and wear scarves. I appreciate reading this and the others comments. Although I have made my mind up that my hair or lack of won't define me it's still comforting to know that others know my pain. My hair may not be my crown anymore, but I'm here and if this is the worst thing that happens to me then I'm still so very blessed. I wish you all the very best in your journey!

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    1. Hello, thank you so much for sharing your experience and your story. Knowing others are having the same journey can be of comfort. There could be several reasons why you are experiencing hair loss so I will list some reasons. First the hair products or hair care practices of your beautician. Are they chemical free, no blow drying, rough handling, continuous flat ironing, etc? Second, is it genetic through your family? If so you may want to read our article here http://www.lovenaturalsunshine.com/2015/04/female-pattern-baldness-alopecia-hair.html
      Third, clean your scarves regularly. Depending on how often you wash your hair it could be bacterial. I hope this helps!

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  8. how many times, should wash my hair per week? i feel like any oils make my scalp itch within 2 days, but washing my hair every 2 days may also overdry my hair? what to do??

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    1. Hi there! Decrease the amount of oils you are using and change them. Use a lighter oil like jojoba oil which mimics the natural sebum that our scalp naturally create. Add a few drops of tea tree essential oil to the jojoba oil to stop the itch. Also, pre-poo (add to your hair before shampooing) your hair with coconut oil to stop the itching as well. Wash your natural hair either weekly or biweekly. Some people wash their hair once a month, others more than once a week. If you notice that washing every two days leaves your hair dry, try to decrease it to once a weak instead.

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  9. Thanks for sharing. I just received the diagnosis of CCCA or CCSA. Currently my condition is pretty mild compared to some of what I've seen. My dermatologist recommended the steroid cream and rogaine for women as well as a anti-inflammatory shampoo. In your opinion, do you think I should start the process of what the doctor prescribed first for a period and then switch to a more natural route? I just don't like the idea of the side effects and the possible backlash from the synthetic drugs. just would prefer a more natural way. Thanks!

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    1. Hi! I apologize for my late reply on this. I hope you are able to read this. I would suggest not doing the rogaine process and instead trying the natural route first. You may see better growth if you try natural remedies like washing your hair/scalp with liquid black soap, keeping your scarves/night caps clean, stopping all damaging styling practices, and using calendula or turmeric internally, as well as nourishing your scalp with the right scalp oils for hair growth.

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