Yardena Gerwin, 18, has lived on the Upper West Side of Manhattan for most of her life. She’s a savvy New Yorker who knows where to get the saltiest pretzel and the best way to get discount tickets to a Broadway show.
But when Yardena was 15, she suddenly lost the ability to speak, write, or even think clearly. She was hospitalized for almost two weeks. The doctors, however, couldn’t find anything clinically wrong with her — and a team of male psychiatrists decided she was suffering from something “psychological.”
Yardena and her family faced misdiagnoses and sexist assumptions about her health. But they persisted, and she was finally diagnosed with a rare form of autoimmune encephalopathy, (an inflammation of the brain that can lead to various neurological symptoms), and with POTS,(Postural Orthostatic Tachycardia Syndrome, a circulatory disorder).
Once she had her symptoms under control, the ordeal inspired Yardena to help other young women advocate for themselves worldwide through Girl Up, an organization funding programs that give girls an equal chance for education, health, social, and economic opportunities.
Yardena has helped pass legislation like the Girls Count Act, which makes sure that all females are counted at birth. She also made new and meaningful collaborations with Seventeen magazine and the Malala Fund. She has won numerous awards and fellowships, including of course becoming a 2018 recipient of the Diller Teen Tikkun Olam Awards for her generous, empowering vision.
We talked with Yardena just before she started college.
Can you tell me about your near fatal misdiagnosis?
I was hospitalized and I was very confused — they kept doing tests and not finding a diagnosis. And so at a certain point, some of the male doctors started talking to my mom about the idea that this was maybe a psychological issue. And my mom was a strong advocate, telling them that I had never experienced any psychotic issues before and that they were not asking basic questions about how much sleep I had — which was an average of three hours per night for over a month — which is enough to make anyone seem manic. And, actually, there were two female psychiatrists who said, “No she’s not showing any psychotic symptoms, you have to find something clinical.” On the tenth day, they ended up doing another blood test which showed elevated antibodies, which led them to a diagnosis of autoimmune encephalopathy. And once I was treated for that, I was lucid again. Everything came back.
What about some of the sexist assumptions you faced?
I’m not saying that every male doctor is sexist. I’ve had many incredible male doctors who’ve been amazing practitioners. And yet, I did have this experience that when there was not a clear diagnosis, the assumption they leaned on was an assumption that’s been made about women — and particularly young women — for hundreds of years.
How did this inspire you to use this experience to help other girls facing discrimination?
I saw the importance of being a strong woman who can advocate for herself, and the ability of institutions to be flawed in some ways. It’s one thing to see that there’s an issue, and it’s another to try to change the situation and be part of the solution.
What were some of the actions you’ve taken through Girl Up?
I’ve learned so much through Girl Up about the challenges that young women face, both domestically and in developing countries. And I’ve learned so many tangible ways to effect change, whether through fundraising, advocating, or pushing to get legislation passed in Congress to help girls in other countries. And I wound up becoming president of the New York Coalition, which has over 20 clubs now.
Can you explain the Girls Count Act?
One of the major issues that girls face in other countries is that they’re not counted at birth, and when you’re not counted at birth, you don’t get a birth certificate, you’re not able to get a passport, and often you’re not able to apply for school. So even if you’ve been to elementary school, in order to go to any secondary school, you need some kind of identification. And another major issue is that when a country like the United States decides how much money to allocate for aid to girls in other countries if there’s not an accurate count then they don’t get enough funding. To understand how huge the problem is: in 2012 UNICEF estimated that four out of 10 births worldwide were not registered. That’s 290 million children around the world not counted and the majority of those are girls who are not on the books so, essentially, they don’t “exist.”
That’s astounding.
Yes. There’s another bill that we’re trying to get passed in the Senate right now called the Protecting Girls’ Access to Education in Vulnerable Settings Act. And that especially affects girls in refugee camps because they’re most at risk. And that’s just one of the forms of advocacy. We also help girls learn how to make calls and write letters to advocate for their rights, and we run something called Advocacy Boot Camps… because there’s a lack of education about what girls’ rights are. A lot of times there’s this notion that if I’m not 18 then nobody cares about me, but young women have a lot to say.
