Hyperemesis gravidarum specialist argues for greater investment in women’s health


Motherly Collective

Over 20 years ago, during my second pregnancy, I experienced a debilitating case of hyperemesis gravidarum (HG). Often given the misnomer morning sickness, the symptoms of nausea and vomiting are rarely limited to the morning, and with HG, are usually nonstop. The experience, one of the most horrific of my life, was made worse due to skepticism and derision from the healthcare professional who was supposed to be protecting me. Even today, this remains a common tale for women, with myriad studies showing that women’s pain is more likely to be discounted than their male counterparts and their symptoms ignored. Over the last two decades, I have made it my mission to ensure that my experience becomes an outlier, rather than the norm—generating knowledge which will lead to better treatments for HG and, most recently, launching Harmonia Healthcare, a specialty women’s healthcare platform focusing on commonly dismissed female-specific diseases.

It is unconscionable that so little time and funding goes into women’s diseases, with only 1% of investment into healthcare research and innovation going toward female-specific conditions beyond oncology, according to a recent McKinsey study. For too long, women’s suffering has been ignored—and I’m so thrilled to be a part of research and innovation that will have an impact on improving reproductive health

Approximately 14% of all pregnancies are affected by severe nausea or HG, with over one-third of HG pregnancies resulting in premature delivery, miscarriage, stillbirth or termination. The economic cost of nausea and vomiting in pregnancy in the US totals over $1.7 billion per year. Emergency room visits, a main contributor to this sum, represent a broken care model for HG treatment. The same study found that women with nausea and vomiting during pregnancy lost an average of 23 days of work, while their partner lost more than three days on average. In the future, this will no longer be the case due to new treatments that Harmonia plans to implement, which will be grounded in my research.

My battle with HG was one of the most challenging periods of my life. Faced with constant nausea, I was unable to eat or drink without throwing up, and was put on an IV drip. My doctor at the time was dismissive, even noting that women often claimed these symptoms as a method to seek attention. I was too weak to advocate for myself, and it wasn’t until I had not kept any food down for over a month and tried 7 different medications at once, that a feeding tube was inserted. It was too late; I lost the baby. 

I tore through medical journals, searching for information on what had happened to me, but few studies existed on this devastating disease. Driven by my own suffering and a desire to ensure better care for women in the future, I embarked on a quest to discover the root cause of HG and validate the experiences of countless women who, like me, had been disregarded.

My experience with HG and suggestion by my doctor that I was purposely exaggerating symptoms is an experience that likely rings true with many women, whose very real pain and suffering is often dismissed, leading to an unacceptable number of women in crisis throughout the country. 

I spent the following two decades dedicated to the research of HG, identifying its causes and now searching for innovative treatments. Most recently, I helped to launch Harmonia as its Chief Scientific Officer. Harmonia, which opened its first center in New Jersey this May, will be a game-changer for HG patients by offering them better care now while simultaneously developing innovative methods to improve care in the future. I’ve also been advising, collaborating and directing research with the HER Foundation since 2001.

A familial aggregation study I led found that if a patient’s sister had HG, they had a 17-fold increased risk of having it themselves. I worked with genetics company 23andMe, Inc. to conduct a genetic study, which found that the greatest genetic risk factor for the disease was a variant of the nausea and vomiting hormone gene GDF15. In a second study, I used an alternate genetic technique and found a rare mutation in GDF15 in some HG patients, providing further evidence for a causal role for GDF15. Most recently, I partnered with an international team of researchers and discovered that people with HG are predisposed to having lower levels of GDF15 prior to pregnancy, making them hypersensitive to the rise of the hormone during pregnancy.

In addition to new predictive capabilities, this opens healthcare providers up to innovative new treatments, as raising a patient’s GDF15 levels prior to pregnancy has the potential to prevent HG. 

Harmonia endeavors to predict, prevent and treat HG with its extremely knowledgeable and versatile team. The center is grounded in the research I’ve helped generate on the condition, but the true stars are our incredible group of patient advocates and leading clinicians. Our approach will combine cutting-edge treatments with compassionate care, offering solace to those who have long suffered in silence. It is paramount to our mission that in addition to innovative treatments, we are providing concierge care and a team of health advocates to our patients, so they no longer have to advocate for themselves while battling a debilitating disease.

Our mission extends beyond mere treatment; it encompasses a commitment to research, innovation, and advocacy. We—along with other revolutionary centers, like The Morning Sickness & HG Clinic of Birmingham, AL—stand at the forefront of a movement, championing the cause of women’s health and challenging the status quo that has long relegated conditions like HG to the shadows.

Harmonia’s expert-led research, diagnostic and treatment programs will result in superior health outcomes. It is my hope that with our centers, no one experiencing pregnancy will ever have to go through what I went through, and we will play a critical role in improving wellbeing and quality of life for women.

This story is a part of The Motherly Collective contributor network where we showcase the stories, experiences and advice from brands, writers and experts who want to share their perspective with our community. We believe that there is no single story of motherhood, and that every mother’s journey is unique. By amplifying each mother’s experience and offering expert-driven content, we can support, inform and inspire each other on this incredible journey. If you’re interested in contributing to The Motherly Collective please click here.





Source link

About The Author

Scroll to Top