Fifteen years ago, I was pregnant with my first child and severely sick. Everyone referred to it as “morning sickness”—albeit a rough case—but I knew it was more than that. I threw up constantly and had very little strength. Opening my eyes, climbing out of bed, and putting clothes on my body felt like the most painful thing I’d ever done. Some days, I couldn’t do it at all.

After the first trimester came and went and I was still losing weight, my sickness was finally acknowledged at the doctor’s office. Prior to that, my complaints were met with mere head nods. I was told that the sickness was completely normal, and that pregnant women experience varying levels of nausea—nobody really knows why—but that it was nothing to worry about. By week 18, I had lost more than 20 pounds, spurring the nurse to double-check my chart. “That can’t be right!” she said, as I stood on the scale and waited for something to click. Finally, I was put on a prescription nausea medication that enabled me to keep down food and water.

Since then, I’ve learned that my ordeal has a name: hyperemesis gravidarum (HG) or extreme morning sickness. And while 18 weeks is a long time to vomit profusely—it feels like an eternity when you’re experiencing it—my case of HG was a more mild one by comparison. Over the years, I have spoken to many women who were hospitalized on and off throughout their pregnancies, or even had to have feeding tubes placed in their bellies to deliver nutrients. I’ve also talked to women who lost their pregnancies due to the illness.

Still, many people don’t even know what HG is. Celebrities like Kate Middleton and Amy Schumer brought some much-needed attention to the illness after they both experienced it, but the condition is devastatingly understudied, and therefore, extraordinarily misunderstood.

However, that’s perhaps finally beginning to change because someone—unsurprisingly, a woman who suffered through the condition herself—did the research and found answers.

Moved to the cause

Twenty-five years ago, Dr. Marlena Fejzo, a geneticist at the University of Southern California Keck School of Medicine, was pregnant with her second child and so ill with HG that she couldn’t move without vomiting. Ultimately, her condition led to her losing the pregnancy. Even during her immense suffering, doctors told her that the nausea was in her head, even asserting that she must be seeking attention.

After that experience, Fejzo got to work, dedicating the past two decades to studying the illness. “Following my own battle with HG, I scoured medical journals for information on why I’d been so sick, and came up empty-handed,” she tells Fast Company. Given her personal experience, she knew how important this research was to ensure women wouldn’t continue to be “dismissed” by their providers. She wanted them to have better treatment options than IVs and Zofran, which, for many women, have little to no effect.

Those decades of research paid off. Last year, Fejzo published her findings in the journal Nature. The study confirmed that the hormone GDF15 was responsible for why some women developed HG. The amount of hormone circulating in a woman’s blood during pregnancy, and how much exposure she had to it, would determine how ill she became. Women with HG had significantly higher GDF15 levels during pregnancy than those who had no symptoms.

The research also offered an interesting lead. According to the study, women who had a rare blood disorder, which gave them high levels of the hormone prior to pregnancy, rarely experienced nausea while pregnant. They were, essentially, less sensitive to the surge of hormones brought by a pregnancy because they’d already been exposed to high levels of it. The case that exposure therapy can be impactful was further supported by promising lab tests on mice, who lost their appetite less from the hormone after previous exposure to it.

The birth of Harmonia

Thanks to Fejzo’s research, there will undoubtedly be greater understanding surrounding HG—such as what causes it, and even just that it’s real. But for Fejzo, that was just the start. Next, she wanted to develop practical plans for treatment that could help women experience safer, healthier, and less debilitating pregnancies.

Fejzo is now cofounding a new women’s healthcare platform for HG sufferers called Harmonia Healthcare, along with Leslie Gautam, who will serve as president while Fejzo will be the chief scientific officer. Harmonia will become the first-ever treatment center for hyperemesis gravidarum when its first location opens its doors next month in New Jersey. A second location will arrive in New York later this year.

The care will be cutting edge. Fejzo says it will combine “the latest in functional-medicine treatments with science-backed resolutions.” She explains that the care will be outpatient and include infusions, electrolyte replacement, prescription care, diagnostic blood work, and home support. But another important mission of Harmonia’s will be “researching new ways to identify people at most risk for HG, and [playing] a critical role in clinical trials testing new methods to prevent and treat HG based on the root cause.”

Despite her groundbreaking work, it isn’t lost on Fejzo that treatment took too long to arrive. She says that’s in part because health issues that primarily impact women are understudied. “Women have been historically underrepresented in healthcare,” she says. “Many women’s conditions are still in the dark ages when it comes to understanding the root cause and ways to diagnose and treat them.”

As for me, four years after my first pregnancy, I went through the sickness again during my second pregnancy—this time, with a small child to chase around. Knowing what to anticipate, I started medication a few days after I found out I was expecting. But early on, the sickness was so powerful that the medicine had no effect.

At five weeks to the day, I started vomiting profusely. I was terrified. For four months, I nibbled on crackers and sometimes sucked on frozen fruit. I wore SeaBands around my wrists and gnawed on ginger chews, and sprinkled drops of lavender everywhere (to this day, I still hate the smell of lavender). None of it helped—but thankfully, once I hit the 18-week mark, the medication eventually made it possible for me not to suffer.

As someone who herself felt baffled by the lack of treatment for HG—just like Fejzo during her own pregnancy—it does feel dark, helpless, and desperate. It’s terrifying to be sick when nobody around you has answers. Now, I can’t help but feel immense gratitude for Fejzo’s dedication to a cause that will help so many women—perhaps one day, even my own daughter—to never feel trapped in that darkness again.