National Scarring Alopecia Awareness Month (Day 2, Fact 2): How Common is Scarring Alopecia ?

Scarring Alopecia is Rare but Still Underdiagnosed

National Scarring Alopecia Awareness Month (Day 2). Most of the 20 or so different types of scarring alopecia are fairly rare conditions overall although they certainly occur at higher rates in the population than we currently estimate and currently diagnose. There are two groups of people who have scarring alopecia. The first is the group of patients who actually receive a formal diagnosis. The second is the group of patients who never actually get told they have scarring alopecia at any point in their lives and just live their life feeling something is not quite right with their scalp or with their hair.

So what are the statistics on how common some of these conditions are?

Well, prior estimates suggest that 6-17 % of black women age 30-60 have CCCA. CCCA is the most common scarring alopecia among black women. For lichen planopilaris, studies from New York have estimated that 1 out of every 5886 patients have this condition. 1 out of every 6666 people were estimated to have frontal fibrosing alopecia.

This data on LPP is the best we have so far. It is probably an underestimation of the true incidence as I would estimate that LPP probably affects closer to 1:2500 to 1:3000 people in North America. So this data would suggest that it is very likely that many people never get diagnosed.

The scarring alopecia known as “Folliculitis decalvans” (FD) is less common than LPP and probably affects 1:15,000 to 1:25,000 patients in my estimation. The diagnosis of folliculitis decalvans too is frequently missed. Dissecting cellulitis occurs less commonly than FD.

In conclusion, scarring alopecia is less common than many medical conditions but far more common than we currently diagnose these conditions. There are large numbers of people in the world who have scarring alopecia but just never receive a diagnosis.

CCCA and lichen planopilaris are among the more common of the scarring alopecias and very much underdiagnosed.

We have a long way to go to educate physicians and the public in these conditions. But National Scarring Alopecia Awareness Month provides one such opportunity!

Reference 

Kyei et al. Arch Dermatol. 2011 Aug.

Olsen EA et al. J Am Acad Dermatol. 2011;64(2):245–252. 

Trager et al. J Am Acad Dermatol. 2021 Apr.