Can you measure the lifelong impact of a disorder that causes no pain but affects your appearance, relationships and perception of self-worth?

This is the challenge with alopecia areata (AA), a disorder in which the immune system attacks hair follicles, resulting in sudden patches of hair loss on the scalp.

Because AA rarely causes physiological pain, it is regarded as a cosmetic disorder rather than a medical disorder and many effective treatments aren’t covered by insurance. Reclassifying AA as a medical disorder could provide better treatment and support for patients.

In a recent paper in the International Journal of Trichology, researchers from Massachusetts General Hospital, the National Alopecia Areata Foundation and the University of California Irvine detailed the negative physical, psychological, social and financial effects of AA from the perspective of cumulative life course impairment (CLCI).

While there have been numerous quality-of-life studies of AA patients, they only look at a snapshot of a patient’s life, explains lead author Laura Burns, a former research fellow in the department of Dermatology at Mass General.

“Depending on when you talk to them, they might have gained a lot of adaptive coping mechanisms, or come to terms with the diagnosis, or any number of things that mean they’re no longer affected in that moment in time,” Burns says. “But their overall life trajectory has been affected at so many different times.”

How Does AA Affect Patients?

Physical Impact:

Alopecia affects 2% of individuals in the United States, and 5% of those cases will progress to alopecia totalis (loss of all scalp hair) or alopecia universalis (loss of all scalp and body hair).

Hair loss increases susceptibility to sunburn, eye irritation and allergies. AA can also cause vitamin deficiencies and sleep disorder and increase the risk of red, itchy skin (atopic dermatitis), asthma and hay fever (allergic rhinitis).

Psychological Impact:

AA is unpredictable in terms of the age of onset and the progression and duration of hair loss, though nearly half of all AA patients seek treatment before the age of 20.

Unfortunately, the sudden onset of AA in childhood—particularly during adolescence—can be devastating, says senior author Maryanne Senna, MD, co-director of the Hair Loss Clinic and principal investigator of the Hair Academic Innovative Research Unit at Mass General.

“We have kids come in who are star athletes, amazing students, they are just thriving,” she says. “Then they get AA and don’t want to be on the basketball team anymore, don’t want to go to school and won’t even go to a holiday party with their family. They’ll just sit inside the car.”

Studies have also shown that AA patients have higher rates of depression and anxiety, adjustment disorder, obsessive compulsive disorder and dysfunction in emotional awareness, social attachment and interpersonal relationships (alexithymia). They also have a higher risk of suicide and self-inflicted injury.

Stigmatization:

From an evolutionary standpoint, hair is a symbol of health, gender, age, beauty, status, values and group membership, Senna explains. The loss of hair can change the way AA patients view themselves, and the way others view them.

Some AA patients have reported that losing their hair made them feel monstrous or alien, noting that fictional villains such as Voldemort, Gollum and Nosferatu are portrayed as bald. They also frequently encounter misperceptions that they are sick or undergoing chemotherapy.

These feelings are compounded by the high visibility of the condition. “When you lose your hair—especially your eyebrows, facial hair and all your scalp hair—that’s on public display,” Senna explains.

Social Impact:

AA-related social rejection can negatively impact self-confidence and self-worth, particularly in pediatric patients. Affected children can be targets of bullying and may have more difficulty making friends. Some choose to avoid sports, activities and other social situations.

Over the long term, AA patients may change their education plans and career trajectory to reduce their public visibility. AA can also negatively impact romantic relationships and sexual quality of life, the authors write.

Financial Impact:

Immunosuppressive drugs have shown promise when used off-label for AA treatment, but they aren’t covered by insurance and can cost patients upwards of $5,000 a month out of pocket.

AA patients also often pay thousands of dollars for wigs, and many are worried about losing their wigs and being unable to afford a replacement. Self-imposed limitations on education and career choices can also negatively affect earning potential.

Helping Patients Cope

Effective coping strategies for AA patients include connecting with other AA patients through support groups and social media platforms, finding creative ways to feel confident, and accepting their condition.

In 2016, Senna received a donation to establish the Hair Academic Innovation Research Unit and support her research into new treatments for AA. “We’re trying to give the best care we can,” says Senna. “It’s important we put it out in the literature to say, ‘Look, this isn’t cosmetic, it can really affect a person’s life trajectory.’

She hopes to secure additional philanthropic funding to establish a first-of-its-kind hair loss center of excellence at Mass General to provide a full suite of services for AA patients, including treatment, psychiatric services and social support.

“My dream is to have trained professionals who understand the condition, provide one-on-one support, and facilitate support groups.”

• To support Dr. Senna’s work and the Hair Loss Clinic, please contact our Development Office.

• Learn more about advocacy efforts on the National Alopecia Areata Foundation website

About the Mass General Research Institute
Research at Massachusetts General Hospital is interwoven through more than 30 different departments, centers and institutes. Our research includes fundamental, lab-based science; clinical trials to test new drugs, devices and diagnostic tools; and community and population-based research to improve health outcomes across populations and eliminate disparities in care.
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