Preparing to welcome a new baby into the world is an extraordinary experience. This time is filled with excitement, anticipation, and hope for the future. But as I get closer to giving birth, I also find myself carrying concerns, not only for myself, but for my child.

As a woman, I’ve faced too many challenges in the health care system: dismissals, misdiagnoses, and moments when my symptoms were minimized or overlooked. Those experiences stay with you, and I can’t help but wonder if I welcome a baby girl in a few months, will she face the same challenges?

That question becomes even more troubling when you consider that women make up nearly 51% of the population in the United States, yet our health has historically been understudied and overlooked. Women were even routinely excluded from clinical trials up until 1993. Because of this, much of modern medicine has been built on research conducted primarily on men, leaving critical gaps in understanding how diseases, medications, and treatments affect women’s bodies.

And still today, women remain underrepresented in clinical research, with participation in some major trials hovering around 40%. These disparities are even more pronounced for women of color, who are significantly underrepresented in medical studies.

When research fails to reflect the diversity of the population it aims to serve, it leaves doctors with incomplete information and patients with fewer answers, treatments and cures — something I know all too well.

I was born with severe von Willebrand disease (VWD), a genetic bleeding disorder that affects the body’s ability to clot blood properly. It is actually the most common inherited bleeding disorder, but it often goes undiagnosed — especially in women.

The reason for these misdiagnoses is frustrating: many VWD symptoms overlap with experiences that society has long normalized for women. Heavy menstrual bleeding, frequent bruising, or prolonged bleeding after medical procedures are often dismissed as typical or expected. As a result, many women with bleeding disorders go years — sometimes decades — without a diagnosis.

Research shows women frequently report negative or dismissive interactions in health care settings, a pattern sometimes referred to as “medical gaslighting,” where symptoms are minimized or attributed to stress or other non-medical causes. These experiences can delay diagnoses, leading to prolonged suffering and worse health outcomes.

While VWD affects both men and women, women often experience additional complications and increased risks during pregnancy and childbirth if the condition is not properly managed.

Imagine if I hadn’t received my VWD diagnosis before I gave birth. Even if everything about my delivery went smoothly, I would have gone home unaware of the risks and potentially faced serious complications like a delayed postpartum hemorrhage. In the absolute worst-case scenario, that could mean not being there to watch my child grow up.

Instead, I’m grateful to have the knowledge and compassionate care needed to manage my condition effectively. Because I know that VWD is genetic, I can watch for symptoms and advocate for my child if needed, especially if I welcome a baby girl who might face the same diagnostic challenges that so many women do. Women’s health — particularly conditions that have long been misunderstood — deserves greater visibility, research, and respect.

Living with VWD as well as Crohn’s disease have given me the inspiration needed to not only advocate for myself, but for my loved ones, community members, and even people I haven’t yet met. I’ve traveled across the country speaking with lawmakers about policies that support people with rare and chronic conditions. Now, as I prepare to become a mother, these conversations feel even more personal and urgent.

Women of color in the U.S. face significantly higher risks of pregnancy-related complications and maternal mortality compared with white women. As a Latina, I am acutely aware of the disparities my community faces — from barriers to care to higher rates of pregnancy-related health concerns.

Over the past decade, patient advocates, researchers, and health care leaders have pushed for greater representation of women in clinical trials and more attention to conditions that disproportionately affect women. These efforts are beginning to close the knowledge gap — but there is still a long way to go.

I look forward to the day when young girls grow up knowing that severe bleeding is not normal, knowing they can advocate for themselves as soon as they find their voice. The day when future mothers don’t have to wonder whether the health care system will take them seriously.

Women make up more than half the population. It’s long past time that we receive equal representation in research — and equal respect when seeking care.

Mia Castañeda-Layman lives with von Willebrand disease and Crohn’s disease. Based out of Ventura County, she is a patient advocate and Vice President of the board for the Bleeding Disorders Council of California.

This article originally appeared on Ventura County Star: Women’s health is not a niche issue — stop treating it like one