Guest Blogger: My Journey with CCCA Alopecia and My Recovery (Part 1)

As I continue my Hair Loss series, I wanted to share with you all a personal blog post by blogger Ronnie of Sankofa Power who wrote of her experience with CCCA Alopecia. This is Part 1 of her hair journey.

This post has taken me 2 years to write. This post is not just about me, I have felt that I am writing this post for so many of my sisters, therefore I felt a sense of reservation, and responsibility. Overtime, I also realized that only a few women are bold and open enough to bare it all and write this post, and because of this, they should. This blog is about health, and presence of mind and as a result, I could not think  of a better topic than the forbidden and hush reality of alopecia in women.

I will start by giving a brief history of my hair. I only had a relaxer from 15-18 years old. I begged my mom after arriving here from Haiti to perm my hair. She agreed and shortly after, I realized how much of a mistake it was. No matter if I did my retouches at a professional or at home, using scalp protectant/vaseline or not, I got burned. My skin was extremely sensitive to the stuff. I would go home with scabs and accepted them as part of the “process.” Or at other times, the burning got so bad so quickly,  I would end up washing the relaxer out before my hair “took”  and end up with 2 textures resulting in the inevitable breakage. Eventually, when I went to college I started to “take the perm out” by braiding. That started my “natural journey” which was more about me not perming then “returning to my roots.”

Fast forward a few years later  of wearing my hair in fros, twist and the staple natural styles, I started loccing my hair. I grew a beautiful long mane of locs for 7 years, cutting it into a bob twice during that time, as I wasn’t a fan of super long locs. I always believe long locs put a lot of stress on the scalp. Around year 5-6 of growing my locs, I started noticing that the hair at my crown was thinning. At first I thought it was from the coloring that I was doing so I switched to more “natural” colors like Herbatint. The breakage and thinning continued. Then I theorized it might be from me twisting the hair in the same direction every few weeks, so I refrained from twisting except for the locs on my “sides”. Eventually, the problem was getting worse, so I just woke up one day in October 2012  and grabbed a pair of scissors and went to work, snip snip.

Loc days January 2009

Locs cut in a short bob circa 2010

Locs days miami loving

When I cut my locs, I discovered that the hair at the top of my head was so brittle, each time I shampooed it clumps of hair would come off into my hands. I discovered a couple of smooth bald spots that were invisible under the twisted locs but now were very obvious. I spent time researching online and money buying products from top companies such as Rene Furterer, and the Phytospecific lines to battle my hair loss to no avail.  After a few months with those products with no progress, I decided to try another path. I respect the authority of the medical profession. I tackled the problem from the medical angle first.  I was tested for thyroid conditions, vitamin deficiencies and hormones levels- All came back normal. Those are common culprits of excessive hair loss. I then visited Dermatologist , Dr. Alexis,  of the Skin of Color Center at Roosevelt hospital for a full examination. They are at the forefront in skin and hair condition in men and women of color. See their Huff article on hair loss What Every Black Woman Needs to Know About Hair Loss: Part 2 . There, I was diagnosed with CCCA. Central Centrifugal Cicatricial Alopecia. The term literally mean hair loss that starts at the crown and spreads throughout the entire head by shutting down the follicles making them smooth to the touch. It is a form of inflammation of the follicles that eventually shuts them down and prevent any hair from ever growing from that location. At the early stages,  the hair that grows from the affected follicles is usually dry, fragile and brittle. I was prescribed steroid cream for my scalp, anti-inflammatory pills and men’s strength rogaine to regrow the hair where I had the bald spots. The causes given by the medical community for this type of alopecia common in women of color are tight hairstyles such as braids, cornrows, and swown on hair pieces, and chemicals such as perms, and permanent colors or even styles that require a lot of heat. Basically anything that puts a strain on the follicles.

I racked my brains to understand how I came to develop alopecia, at first I attributed it to the twisting it takes to upkeep locs, although I didn’t twist often. I avoided tight updoes because they exacerbate my migraines, and kept my hair short to reduce the amount of weight each loc would have on my scalp. I can however recall sitting under the “atomic nuclear hot” hair dryers at the hair salons for over an hour when I used to get rod sets to curl my locs. I would feel my scalp literally cooking and sizzling under there , only to be told by the hairdresser that I still had  30 minutes to go.  This might have played a role in me developing this condition. I cannot say what for sure, although I do believe these hair practices might be the culprit in most cases of alopecia. I have however met women who did neither but still started to experience the same issue. The causes, in my opinion, are numerous and different in each case.

As I started sharing this experience with the women around me, mostly because the “why did you cut your locs” question came up quite often, I realized that so many women, especially black women were suffering from alopecia. All of them suffering in silence and eager to hear answers on what to do. There is shame associated with alopecia as hair is such an important part of our lives, especially as women. Most women I encountered simply covered it up with hair pieces or braids. But all were interested in what my treatment was and how it was going. I inspired many to look into any medical causes behind their hair loss and start their journey into recovery.

1 year AFTER my natural oils treatment regimen

If there’s anything that I am grateful for about this experience is that I inspired other women  to speak their truth and face their own battle with alopecia. My next post will explore the medical and natural homemade treatments I followed contributing to my recovery seen above. I am not at 100% yet but I am happy that I am making progress.

fall 2014

In Health, and Presence of Mind

Ronnie Deco

More: Hair Loss Series Part 1 - CCCA Alopecia

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