I Had a Stroke at 36. Here’s What I Want All Women to Know

It happened seven years ago, when I jumped into the shower right before my daughter’s first Mommy and Me yoga class. I felt a really bizarre shooting pain down the left side of my body. For a split second, I looked at my arm drooping against my side—it didn’t look or feel like it was my arm.

I immediately wanted to tell my husband—who, luckily, was home that day—that something weird happened. It felt kind of like my leg had fallen asleep. But as I tried to step out of the shower, I realized I couldn’t even lift it.

By the time I found my husband, I could move my arm, but my foot still felt the same. Then I got a massive headache. I’ve always suffered from migraines, but this was way beyond that.

At the time, it didn’t occur to me that any of this was serious. After all, I was only 36. I had a five-year-old daughter and an almost two-year-old son. I was much more concerned about getting to my daughter’s yoga class on time than I was about my health. And besides, I was really healthy. I had just lost 80 pounds of pregnancy weight by developing a style of barre class that I had started teaching; barre helped me get into even better shape than before having kids.

But after lying down for a half hour, my headache was still getting worse, so my husband convinced me to call my primary care doctor. As soon as a nurse heard what was happening, she said, “I want you to hang up the phone and call 9-1-1.”

I said, “Are you crazy?” and I hung up the phone. I know now that if someone is suffering a brain trauma, you can’t rely on their ability to make decisions.

After another hour with no improvement, my husband finally convinced me to go to the emergency room at Massachusetts General Hospital, which is near our home in Boston. I was prepared to be in the waiting room for hours. But the staff took one look at me and immediately brought me in. They did a lot of tests, like poking my feet with needles and ice, and I couldn’t feel anything. My left leg was almost paralyzed at this point. They admitted me to do an MRI, which I apparently fell asleep in. I remember them waking me up to get an IV of dye and send me back into the machine.

That was the point that I realized things were bad.

When the doctor told me I had had a stroke, I was shocked. I thought that only old and sick people had strokes. I didn’t even know that it was possible for someone my age to have a stroke.

“I have two babies at home.” I told the doctor. “How long do I have to be here?” He said, “In this case, it could be five weeks at the hospital. And then you’ll have to go to a rehab hospital to teach your brain how to regain control of the left side of your body.” There were a lot of tears and fear that day.

Luckily, my husband was by my side and kept his sense of humor. He sat next to me to fill out the required end-of-life paperwork, and I told him that I wanted to make sure that if I died, he would remarry. “I’ll never remarry,” he joked. “I’ll just date everybody.”

Miraculously, I woke up the next day with control of my left leg again. “We attribute this to you being healthy and fit," the doctor told me. "If you weren’t, the stroke and recovery probably would have been a lot worse.”

I ended up spending only five days in the hospital. The most likely cause of my stroke was a small hole in my heart called a patent foramen ovale (PFO). Everyone has a hole in their heart before birth to help with blood flow. It usually closes right after a baby is born. I am one of the 25 percent of Americans that have a hole that didn’t close properly. Most people who have this condition aren’t aware of it.

I also learned that I have a hereditary gene mutation called Factor V Leiden (FVL) that makes my blood clot more easily. I’ve read that 5 to 8 percent of the population may have this mutation, but the real number is likely higher. FVL is the most common genetic cause of blockages in the arteries that limit blood flow.

You can have both conditions for life and never be impacted. But my body formed a clot, and because of the hole in my heart, the clot traveled right to my brain and caused an ischemic stroke.

What triggered this series of events? Birth control pills. While the pill is a completely safe birth control option for the vast majority of women, it also can increase the risk of stroke. I had been on the pill since I was 16 because I had bad cramps. I remember my doctor saying, “Here—take the pill and never go off it. The pill is good for you.” No one said, “By the way, you might have a stroke.”

I ended up having a 10-hour heart surgery about six months after my stroke to repair the hole in my heart, which wasn't so fun. But it was an extra layer of protection. There’s always a chance I could have another stroke, but I can do things to reduce my risk. I have to make sure that I'm hydrated, take a baby aspirin every day, and avoid oral contraceptives and hormone therapies.

As I started diving deeper into the reasons for my stroke, I discovered some surprising information. When I described a miscarriage I had a few years prior to my hematologist, she said that the circumstances—and the fact that I was almost four months pregnant at the time—suggested that the pregnancy could have triggered FVL, causing a clot to form in my uterus.

I told the hematologist about my sister, who happened to be just six weeks pregnant at the time. “You need to get her tested today,” she said. The test revealed that my sister also had FVL. She had to take a blood thinning injection every day for a year. As a result, she had a healthy pregnancy and a beautiful daughter. I always say that my niece is the silver lining in my whole scary experience.

But I couldn’t stop wondering: How is it possible that women don’t know more about this?

As I started talking to my doctors and getting more involved as an Ambassador to the American Heart and Stroke Association, I met more and more women who had strokes because of the combination of being on the pill and having FVL. I wanted to make sure that women have all the available information before choosing oral contraceptives.

I started fighting for a change in the legislature. After a few years of pleading my case with everyone at the Massachusetts State House, I got a bill filed in 2019 to require women to be screened for FVL through a simple blood test that would determine if they're safe to be put on the pill or hormone therapy. Because of the pandemic, the bill didn’t even make it to committee in 2020. It was refiled this year, but bills take a long, long time to go anywhere.

In the meantime, there are still things women can do to educate themselves about the risks of FVL. If you are taking birth control pills or considering starting birth control pills, ask your doctor to screen you for FVL. And if you’re needle-shy, 23andMe, a saliva-based at-home DNA test, now screens for FVL. My daughter is now 13 and I bought the test to see if she also happens to have FVL.

Whether you’re tested or not, and whether you have FVL or not, I want everyone to know that you’re never too young to be vigilant about your health. No matter what age you are, start tracking your blood pressure, cholesterol and BMI on your own. So many times, you can fall in the range of “normal,” but if you happen to quickly shoot up 10 points from your normal, that can be a problem. See your doctor regularly and remember that skinny doesn’t always equal healthy. You must be your own advocate. If you have an odd feeling in your body or your numbers don’t seem right, speak up.

Lastly, know that it doesn’t take major changes to make a big difference in your long-term health. You don’t have to run a marathon. You don’t have to go to the gym every day. Small dietary changes and just walking can have such an impact. Eighty percent of stroke and heart disease is preventable by improving your lifestyle. So don’t wait. Start making changes today.