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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