‘Alopecia involves a lot of shame, especially in women’

Autoimmune disruptor alopecia is suddenly in the spotlight, thanks to comedian Chris Rock’s Oscar joke about Jada Pinkett-Smith, and her husband Will’s blow that followed. According to Johanna Kasperkovitz, board member of the Alopecia Association, the condition brings a lot of uncertainty and grief for patients.

Jesper Roele

It is the talk of the town and it will continue to simmer for a while. “GI Jane 2, can’t wait to see you.” A joke by Rock about Jada Pinkett-Smith, in which the comedian refers to the movie GI Jane from 1997, for which actress Demi Moore shaved her head, went completely wrong with actor Will Smith. He walked on stage and punched Rock, while millions of people watched on live television. Smith’s wife, Jada Pinkett-Smith, has been battling metalopecia areata for years, a patchy baldness that can occur anywhere on the body.

About two percent of people will experience alopecia at some point. The body’s immune system is then disrupted and the immune system attacks its own hair follicles. This can manifest itself in various ways. Some variants are temporary, others permanent. Sometimes it doesn’t just stay with a bald spot, but all the hair falls out, including the body hair. “That’s alopecia universalis,” says Kasperkovitz. It is also the most far-reaching form. “Then people also get less facial expressions, due to the lack of eyebrows and eyelashes. But whatever form of alopecia someone has, he or she will change appearance in such a way that the identity will have to be reinvented in part.”

Getting alopecia brings a lot of uncertainty, says Kasperkovitz, who also has the condition himself. “There is a lot of shame involved, especially among women. They link their femininity to their hair.” She thinks society can play a role in the acceptance of the condition. “If the environment says it’s okay to be bald, people are less inclined to hide it. Now many women often take another hairpiece to hide it.”

About the conscious blow, Kasperkovitz says that ‘violence can of course never be a solution’. “But it is understandable that emotions can run high. A joke can be very hurtful, even to loved ones.”

no medicine

There is no prospect of a drug or effective treatment for the time being. However, experiments are underway with treatments. Often these have only a limited or temporary effect, and side effects can also occur. The Alopecia Society has been promoting research into new treatments for the condition for years.

Kasperkovitz herself, like Jada Pinkett-Smith, decided to shave her hair. “I wanted one solution and not different hair every time. So I shaved it off and shared that on LinkedIn. Since then I have only received positive reactions.” According to her, it helps to be open. “In the Netherlands, society is very comfortable with that. We need to look at the person behind the condition. If you can also show your femininity with short hair, that is already very valuable.”

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