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Her Doctor Said Her Illness Was All in Her Head. This Scientist Was Determined to Find the Truth.

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Unable to find a mentor interested in hyperemesis, Dr. Fejzo took a job studying ovarian cancer at the university, a position she stayed in, mostly part-time, for 20 years. But she began piecing together research on hyperemesis during her evenings and weekends and on Fridays when she wasn’t working in the lab. Her younger brother, Rick Schoenberg, 51, a statistician at U.C.L.A., helped her create an online survey of hyperemesis patients, and the Hyperemesis Education and Research (HER) Foundation offered collaborators and small grants to fund her work. In 2005, Dr. Fejzo also began partnering with obstetrician-gynecologists at the University of Southern California.

Tallying survey responses, “I saw right away that it was running in families,” Dr. Fejzo said. “The answers kept coming in where people were like, ‘Yeah, my sister has it; my mom has it.’” In 2011, Dr. Fejzo and her collaborators published their findings in the American Journal of Obstetrics and Gynecology. Women who had sisters with hyperemesis, they found, had a 17-fold higher risk of developing the condition than those who didn’t, providing some of the first clear evidence that the condition could be passed down from parents.

Dr. Fejzo knew that DNA analysis would be crucial to understanding the genetics of hyperemesis. So in 2007, she began collecting saliva samples from people who had experienced the condition and those who hadn’t. Every Friday for 10 years, she called study participants — more than 1,500 in all — to request their medical records and consent to participate, and mailed them saliva collection kits from her home.

But Dr. Fejzo wasn’t sure how she would pay for the genetic analyses. Her grant proposals to the National Institutes of Health were rejected. Since 2007, the agency has funded only six hyperemesis studies, totaling $2.1 million.

That amount is small in comparison with the economic burden of the condition, said Kimber MacGibbon, executive director of the HER Foundation. (Amy Schumer, who publicly documented her struggles with hyperemesis, is on the foundation’s board of directors.) Hyperemesis hospitalizations are thought to cost patients and insurers about $3 billion per year, she said, and then there are the expenses of medications, home health care, lost work and complications like postpartum depression. “The costs of it are just astronomical,” she said.

Without funding to analyze the saliva samples accumulating in the lab freezer, Dr. Fejzo discovered an alternative strategy when her older brother gave her a 23andMe DNA testing kit for her 42nd birthday. After registering her kit, she received a standard email giving her the option of participating in the company’s research studies by completing an online survey and consenting to the use of her genetic data. “I saw what they were doing, which I thought was brilliant,” she said.

She asked 23andMe if they would include a few questions about nausea and vomiting in pregnancy on their customer survey, and they agreed. A few years later, she worked with the company to scan the genetic data of tens of thousands of consenting 23andMe customers, looking for variations in their DNA associated with the severity of nausea and vomiting during pregnancy. The results were published in the journal Nature Communications in 2018.

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