UCSF Dermatologists Pen Book to Promote Education of Rare Disorders That Cause Hair Loss

October 2011

Cicatricial alopecia, a group of rare disorders that cause permanent hair loss, destroys follicles and replaces them with scar tissue. It is exceedingly difficult to diagnosis, which means that anguished patients can spend years trying to figure out what’s wrong.

UCSF dermatologist Vera Price, MD, decided to change all that. Knowing that the subject is not covered in most training programs, she and her former fellow, Paradi Mirmirani, MD, decided to write a book that they hoped could be used by residents in their field. The result is the first text ever produced on the topic: “Cicatricial Alopecia: An Approach to Diagnosis and Management.”

“We realized that education was needed, and we decided to do it,” Price said.

The problem is that the book costs $139, a daunting sum given that Price and Mirmirani, a Kaiser Permanente doctor, wanted to donate it to the dermatology residents in the United States and Canada. Consequently, Springer, the book’s publisher, agreed to make DVDs available for $12 apiece. Then the families of six UCSF patients involved with cicatricial alopecia donated more than $13,000, enough to buy and distribute 800 copies.

“We realized we had to get to the dermatology residents to make an impact,” said Price, a Fellow of the Royal College of Physicians of Canada. “We were lucky enough to get these very generous people to contribute the funds for their education. And it’s a very nice thing for the department to support.”

Price is one of the world’s leading experts on the group of disorders, which all involve inflammation of hair follicles and can be accompanied by itching, burning, pain and scarring. Once the follicles are destroyed, hair loss is irreversible. Treatments vary, depending on the type of cictricial alopecia, but can include anti-inflammatory medications and antibiotics.

UCSF Center Offers Hair Expertise

Price is co-founder of the Cicatricial Alopecia Research Foundation, which includes more than 1,800 patients in 35 countries. She said the incidence of lichen planopilaris, the most frequent disorder in the group, was 7.59 percent in a one-year period among new hair-loss patients at UCSF. In contrast, the annual incidence was only 1.88 percent among similar patients at the University of Pennsylvania.

“It’s not rare at UCSF because patients get funneled here as a center with hair expertise,” Price said. “So, the incidence at our center is not typical.”

Price and Mirmirani hope that the book will help dermatologists to recognize and manage these problems, which are not life-threatening but certainly life-altering.

She said she has received wonderful feedback about the 90-page book, which was published in May and is lavishly illustrated with photos taken by Price and Mirmirani.

“There are cookbooks where all you need to know are the ingredients and you can pretty much put it together,” Price said. “And there are cookbooks like Julia Child’s, where she basically tells you which spoon you should use and what pan you should use. This book is written like Julia Child’s book. ‘This is how you seat the patient. If you’re going to look at the scalp, put the patient on a chair so that you can see the top of the head, not up on a table unless you are a giraffe.’ It’s written in a very practical way.”

She and Mirmirani offered to bring the DVDs and give a lecture about cicatricial alopecia to the dermatology departments that requested this, and they are booked through 2012.

In the letter that accompanies the DVDs to dermatology residents, they wrote: “We sought to replicate a teaching session and the information is presented as though the viewer was shadowing us in the clinic. Each disease chapter is introduced with a clinical scenario of a patient, along with relevant clues for making the diagnosis. By immersing yourself in the topic of cicatricial alopecia, our aim is to promote a more global and systematic view of these disorders.”

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