CCCA: Public Enemy #1

Written on: Nov 26, 2018
By: Shari Hicks-Graham

My new patient office visits are often filled with anticipation, especially when the visit involves a female patient with the primary concern of hair loss. I put myself in her shoes and imagine how she may feel after she has found the courage to seek help, scheduled an appointment, and has waited for days, weeks or sometimes months before we finally meet. The new patient’s personal description of the issue leads to a fear: another diagnosis of central centrifugal cicatricial alopecia (CCCA). I believe it is truly Public Enemy #1 for black women with hair loss.

CCCA is extremely common among adult black women. This demographic may notice that it begins with a patchy area of hair loss on the top of the scalp. Over time, it becomes more pronounced and larger in size, spreading outward and scarring. One of the well-known associations with CCCA is low-grade inflammation. A patient recently described this as the scalp feeling “busy.” To say that it hurts may be an overstatement, although pain and tenderness can be present at times. Most often though, there is a feeling of scalp tightness, itching or soreness.

It is easy to overlook these feelings because sometimes we are introduced to uncomfortable conditions early in our life and we often rationalize the discomfort as being something we have to deal with to get the style that we want. Indeed, many of us have experienced tenderness with braids as a child, relaxers at later stages, or most certainly with hair extensions. It is troubling that we are seeing CCCA at younger ages than ever before. CCCA is difficult to treat and often progresses to permanent hair loss if it is not properly managed at an early stage. Therefore, if an individual has not addressed the fundamental issue and only kept her condition well-hidden with hair weaves or braids, I anticipate that treatment will be challenging from the start.

Once an issue is identified, CCCA remains a very challenging condition because it is poorly understood and not associated with clear and defined guidelines for prevention or cure. In fact, there is no cure. These are tough facts to face, particularly for most of us with extremely high standards for beauty that are closely linked to our hair. No one wants to hear that any hair problem is permanent and I sympathize with each patient with this diagnosis. However, there are both established and emerging therapies that are effective so that gives us some hope!

As we manage CCCA, we stress the need for gentle, tension free hairstyles, and often recommend medications like topical or injected steroid solutions and oral antibiotics for inflammation, along with minoxidil for hair growth. Dandruff, a condition on the spectrum with the more severe seborrheic dermatitis, has been associated with CCCA. Treatment includes antifungal shampoos that tend to be a bit harsh and drying, like ketoconazole or selenium sulfide. Notably, some reports indicate that dandruff affects roughly 60-80% of African-American adults at some time within their lives. I became tired of telling my patients to use a variety of products to help their dandruff even though I believed those products were not made with their particular hair type in mind. Now, LivSo is available, it was made for those with textured hair in mind, and our study proved that it helps to reduce dry itchy scalp.

My goal was to help people realize that you don’t have to compromise the look and feel of the hair in order to take good care of their scalp. That’s why LivSo is here - it’s a gentler, more cosmetically elegant formulation intended to quiet that busy feeling scalp while moisturizing the hair. We know that if we can help reduce the itch, it will be easier not to scratch and damage the sensitive scalp. Additionally, if the hair detangles more easily, it will reduce the tension and work of styling. Moreover, if we can help alleviate some of the symptoms associated with CCCA and improve the quality of life of CCCA patients, that would be excellent.

I was happy this month to see a recent groundbreaking article in the Journal of the American Academy of Dermatology by Dr. Crystal Aguh and colleagues from Johns Hopkins University and Meharry Medical College defining some of the genetic changes implicated in CCCA. We are learning that scar tissue overgrowth in this condition is also associated with other common diseases in black women like fibroids, liver fibrosis and cardiovascular disease. We have always suspected that CCCA is not a superficial concern, and this article supports the notion that it is certainly more than skin deep. We know that additional research is necessary to understand why CCCA is such a devastating disease with inconsistent treatment options. Meanwhile, we hope that LivSo remains a source of light reminding our user that professionals who care about this disease are out here working for you. So, don’t give up hope!  

Live free and clear,