What causes CCCA? Plus albinism awareness goes global

What causes CCCA? Plus albinism awareness goes global

This week, Nick Andrews talks with reporter Kari Oakes, whose feature for our January print issue highlighted the dermatologists working in Africa and here in the United States to promote inclusivity and provide care for people with albinism. The condition is much more common in parts of East Africa, where people with albinism are stigmatized and even hunted and maimed for body parts. The segment features David Colbert, MD, a Manhattan dermatologist whose foundation has partnered with the United Nations for an awareness-raising campaign. He also talks about the nuts and bolts of how even busy dermatologists can get involved in philanthropic and nonprofit work.

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Hair loss from central centrifugal cicatricial alopecia (CCCA) often is attributed to hairstyling practices used by black women, but the scarring process actually is similar to other scarring conditions. Dr. Vincent A. DeLeo talks with Dr. Crystal Aguh about the pathogenesis of CCCA and its systemic implications. “Before you can even start to ask what causes [CCCA], you have to believe that there is a biological basis of disease, and so when you put the onus on the patient and the blame on the patient, then in reality you’re saying, ‘Well if you didn’t do this, this would not occur,’ and we’re really not seeing that in our patients,” explains Dr. Aguh.

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Things you will learn in this episode:
When CCCA was first described in the 1960s, it was initially called hot-comb alopecia. When hairstyling practices changed but CCCA persisted, it later became known as chemically induced alopecia. Later, it was associated with weaves and extensions.

Research has shown there is a considerable overlap in gene expression patterns in CCCA and other scarring disorders such as uterine fibroids, hepatic fibrosis, and idiopathic pulmonary fibrosis. “This scarring process is very similar to other diseases of systemic scarring, and that really starts to shed light into the presentation of this disease,” explains Dr. Aguh. In one study, black women with CCCA were 5-times more likely to have uterine fibroids than black women who did not have CCCA, which speaks to a systemic process.

The gene implicated in uncombable hair syndrome, PADI3, has been found to be upregulated in patients with CCCA, suggesting that disorders of hair shaft formation may subsequently lead to the abnormal scarring seen in CCCA patients. The inheritance pattern of CCCA still is unknown but is an avenue for future research.

The systemic implications of CCCA, such as the link to uterine fibroids, show that it is more than an aesthetic disease: “The skin and the hair are really kind of window into what’s going on systemically, and [CCCA] is really important not just because the patient feels like they don’t look the way they want to but because it can adversely affect their health,” notes Dr. Aguh.

Unlike other scarring alopecias, you cannot reliably use erythema or inflammation as a measure of activity in CCCA, as many patients have no clinical evidence of disease. As a result, topical treatment options such as intralesional steroid injections often are continued for years because it is difficult to tell if they are working.

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Hosts: Nick Andrews; Vincent A. DeLeo, MD (Keck School of Medicine of the University of Southern California, Los Angeles)

Guests: Crystal Aguh, MD (John Hopkins University, Baltimore)

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Show notes by: Alicia Sonners, Melissa Sears, Elizabeth Mechcatie
You can find more of our podcasts at
Email the show: podcasts@mdedge.com
Interact with us on Twitter: @MDedgeDerm

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