Central centrifugal cicatricial alopecia

Working with community-based businesses, like hair salons, is an avenue for dermatologists to connect with women who may be experiencing conditions like central centrifugal cicatricial alopecia (CCCA). Earlier connections may result in earlier detection of the condition when treatment can potentially halt disease and avoid irreversible damage to the hair follicles, according to experts.

Speaking at a session on community-based partnerships with hair stylists held during the annual meeting of the American Academy of Dermatology, dermatologists said reaching out to business professionals in the community is a means of finding African-American women who have CCCA and other forms of hair loss prevalent in African-American women earlier, when they would clearly benefit from seeing a dermatologist for treatment.

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Yolanda M. Lenzy, M.D., M.P.H."Typically we see patients with scarring alopecia after they have had it for many years, and it's not reversible," says Yolanda M. Lenzy, M.D., M.P.H., Medical Director of Lenzy Dermatology & Hair Loss Center in Chicopee, Mass, who spearheaded the initiative to reach out to hair salons.

"We want to identify hair loss in earlier stages and reach clients [of hair stylists] so that these clients, who are our patients, can get diagnosis and treatment," says Dr. Lenzy. "We want to see women when they are in Stage I and II of their disease. We tend to see them [initially] when they are in Stages III, IV and V."

CCCA is a condition that was first described in 1968 and referred to as hot comb alopecia, notes Dr. Lenzy. There is a dearth of research into the condition, and no FDA-approved treatments for it.

Seeing too many patients with hair loss for whom she could not provide significant care motivated Chesahna Kindred-Weaver, M.D., a dermatologist based in Baltimore, Md., to collaborate with Dr. Lenzy.

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Chesahna Kindred-Weaver, M.D."If patients came in early enough in their disease state, I could help them," says Dr. Kindred-Weaver. "Patients who came in early enough were few and far between."

Communication between hair stylists and dermatologists is vital toward making headway in the prompt detection and management of CCCA, according to Dr. Kindred-Weaver.

"Dermatologists and hair stylists have a common goal, but we are not talking to each other," says Dr. Kindred-Weaver, who has made contact with hair salons in her local area.

Education of hair stylists about CCCA and other hair conditions trickles down to clients, and these clients, as patients of dermatologists, are then more informed about hair loss conditions, so the time that dermatologists spend with patients is not dedicated mainly to dispelling myths about hair loss. "I spend more time telling patients what is not true than what is true," says Dr. Kindred-Weaver. "[Reaching out to stylists] makes my time spent with patients more efficient."

NEXT: lack of therapies

Caption: Stage III CCCA

Lack of therapies

CCCA is not a well-understood condition, and more research is definitely needed to elucidate the etiology and to develop potential therapeutic targets, says Dr. Lenzy. It is known that the condition involves inflammation of the hair follicle where the stem cells and sebaceous gland reside. Permanent hair loss occurs when there is no potential for hair follicle regeneration.

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In the absence of evidence-based therapies to manage CCCA, dermatologists prescribe off-label treatments to patients with CCCA such as topical steroids, which are applied directly to the scalp, and dermatologists may also prescribe immunosuppressive agents to manage the condition, says Dr. Lenzy. Dr. Lenzy stresses that there is a clear unmet need for well-studied treatments for CCCA.

A lack of education on the part of stylists can lead to relaying inaccurate information to patients with CCCA.

Case in point: Dr. Kindred-Weaver cites an example where a stylist told a client that she was experiencing hair loss due to antihypertensive medication.

"We don't want stylists to tell a client her blood pressure medication caused her hair loss," says Dr. Kindred-Weaver. "High blood pressure is common in African-American women, and we don't want them to stop taking their antihypertensives."

Other explanations that stylists have put forth for the hair loss is "stress", so informing stylists about different hair loss conditions will correct misinformation that is being conveyed, explains Dr. Lenzy.

Education of stylists will be a means of minimizing the potential for women with CCCA to engage in damaging hair practices, such as using relaxers or applying too much heat to their hair, says Dr. Lenzy, who is also a licensed cosmetologist.

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"Patients [with CCCA] should limit the amount of heat exposed to the hair because it can lead to increased breakage," says Dr. Lenzy. "I recommend that they consider discontinuing relaxers but if they don't, limiting relaxer use to no more than every eight to 12 weeks."

Chief in the interaction between the dermatologist and the patient is to shift the focus from telling the patient that their hair care practices directly caused their CCCA, says Dr. Lenzy. "The etiology of CCCA is not well-understood, but it's a multi-factorial condition, likely due to genetics as well as hair practices."

Cultural competency in medicine allows dermatologists to more effectively communicate with their patients about their hair grooming practices, says Dr. Lenzy. Many patients with CCCA will likely not be seeing an African-American dermatologist, given that African-Americans make up only 2% to 3% of practicing dermatologists in the U.S.

"This is why [AAD] sessions like this are important," says Dr. Lenzy. "If dermatologists can speak the language and understand the terms and practices [in hair care] they will get more buy-in from the patient. Many African-American women shampoo their hair less frequently because of the dryness of their hair, and they may feel dermatologists may judge them for shampooing, say only once a week. If patients don't tell us information, we won't be able to serve them well."

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The Cicatricial Alopecia Research Foundation is a good resource for patients with CCCA. It offers information about the condition, and the website (www.carfintl.org) lists support groups that exist for patients, notes Dr. Lenzy.

NEXT: Champions for communication

Stage III CCCA

Champions for communication

With several dermatologists acting as champions for this initiative in several geographic spots in the U.S., Dr. Kindred-Weaver estimates that about 1,100 women have been reached through the hair stylist effort. "It is more efficient to spread the word about hair loss (through contacting hair stylists) rather than seeing one patient at a time.”

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Dr. Kindred-Weaver and her colleagues have observed that hair stylists who have been educated about the condition modify their practice when they are styling a patient with CCCA.

Making the first point of contact with hair salons may represent a challenge for dermatologists, and Dr. Kindred-Weaver suggests that dermatologists contact distributors of hair products to make contact with hair stylists. "The salespeople who go from salon to salon selling products have access to dozens of hair stylists in their local area," says Dr. Kindred-Weaver.

Kimberley S. Salkey, M.D.When stylists are educated about CCCA and other hair conditions, they can advise their clients about hair styles that won't exacerbate CCCA, explains Dr. Kimberley S. Salkey, M.D., Assistant Professor of Dermatology at Eastern Virginia Medical School in Norfolk, VA.

"Certain hair styles may make the condition worse," says Dr. Salkey. "They may want to get braids or a weave for example. Such styles can make it difficult or impossible to apply medication to the scalp and preclude examination at follow-up visits. I encourage patients to discuss with their stylist what hair styles will not damage their hair, but at the same time, help them to achieve the desired look."

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Wigs may serve as effective camouflage for women who are being treated for CCCA. "As long as they don't pull on the hair, they don't do any damage to the scalp," says Dr. Salkey.

While Dr. Salkey does not recommend particular products for patients with CCCA to use, she does suggest that they use products that are gentle on the hair, but adds that patients with CCCA should also be able to look to their stylists for recommendations about what are appropriate products to use based on their hair type.

NEXT: Psychosocial implications

Psychosocial implications

The psychosocial impact of CCCA should not be underestimated, notes Dr. Salkey. "The quality of life of [these] patients is being impaired," says Dr. Salkey. A number of studies have been performed to evaluate the psychological burden of living with hair loss. Such patients, regardless of the cause of their hair loss, experience higher rates of anxiety and depression than patients without hair loss. One study concluded that alopecia has a greater impact on functional and emotional well-being than moderate-to-severe psoriasis, points out Dr. Salkey.¹

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"It is fair to say that many dermatologists don't like to see patients with hair loss because of the complexities of the disease and the emotional aspect of the disease," says Dr. Salkey.

Having a therapist or a psychiatrist to whom patients with CCCA can be referred is a valuable part of any treatment plan. Dr. Salkey also addressed the often overlooked economic burden of CCCA. It is difficult to quantify that burden, however, because costs arise from a variety of factors: hair care products, styling tools, salon visits, physician visits, prescription medications and lost wages.

In time, Dr. Lenzy and her colleagues aspire to identify a cause for CCCA, which will allow more focused efforts on prevention and treatment and help patients to avoid the devastating emotional and financial toll this disease can take.

Disclosures:

Dr. Kindred-Weaver and Dr. Salkey report no relevant disclosures. Dr. Lenzy receives research funding from Sundial Brands, the manufacturer of Shea Moisture.

References

1.    Reid EE, Haley AC, Borovicka JH, et al. Clinical severity does not reliably predict quality of life in women with alopecia areata, telogen effluvium, or androgenetic alopecia. J AmAcad Dermatol. 2012;66(3):e97-102.