Woman
The Fear of Another PE Still Lives in my Body: Caitlyn’s Story
It was a couple of days after traveling when I first noticed something wasn’t right. I had switched birth control pills within the last several months. At my first conference talk after COVID, I realized mid-presentation that I couldn’t quite get through full sentences without pausing for breath. I told myself it was just nerves.…
Advocate For Yourself: Fallan’s Story
In February 2025, while at work, I started developing a terrible headache, fever, chills, and body aches. I assumed I was coming down with the flu. I spent a day in bed watching TV and resting. Two days later, the flu-like symptoms subsided, but I developed stiffness and pain in my neck. Within 24 hours,…
Blood Clots Can Happen to Anyone: Brenna’s Story
I’m 30 years old and have a complicated medical history. As a teenager, I was diagnosed with fibromyalgia and Ehlers-Danlos syndrome, and today I manage more than 20 different health conditions. On April 20, 2021, I felt severe pain in my left leg. It was swollen, purple, and hot to the touch. I called my…
I Learned to Love My Body Again: Andreea’s Story
Two weeks after a 68-mile bike ride, I couldn’t straighten my leg, and my veins bulged. “It’s just a bruise,” the ER doctor said, looking at my leg. He dismissed it the same way that the sports doctor and physical therapists did. But weeks later, my leg looked blue with spider veins. I sent a…
As a Physician, I’m More Aware of Looking for Blood Clots in my Patients: Lynette’s Story
In 2014, while in podiatry school, I went to the student health center because I was short of breath and was coughing up blood. The nurse practitioner diagnosed me with bronchitis. Less than two weeks later, I learned the truth — I had a saddle pulmonary embolism, which means a large blood clot was blocking…
This Could Have Ended Up Much Worse: Michelle’s Story
In February 2021, on a Friday, I noticed that my heart rate was getting high with very little activity. By Monday, I was having chest pains and severe shortness of breath. On Tuesday, I decided to go to the hospital because I was concerned about my heart. After almost passing out multiple times in the…
I Collapsed on an Airplane After a 15-Hour Flight: Enisa’s Story
On Christmas Day, 2017, I was on a flight home to Sydney. I sat in the window seat on the connecting flight from Dubai for 15 hours. A young couple sat beside me, lounging in their seats and sleeping with their legs stretched out. Luckily, I didn’t need the toilet. About 30 minutes before the…
Blood Clots Can Be Silent and Misleading: Jamie’s Story
Five days before everything came to light, I sat in a rheumatologist’s office explaining my concerns. Instead of investigating, she dismissed me, chalking it all up to my Ehlers-Danlos syndrome. My after-visit summary simply said to “wear spandex-type garments,” and there was no more that rheumatology could do for me. I left feeling unheard and…
Fight For Yourself: Sarah’s Story
After two long months of debilitating headaches and vision problems, I was finally diagnosed in July 2025 with a cerebral venous sinus thrombosis (CVST), a rare and dangerous clot in the veins that drain the brain, at 24 years old. My first ER trip was in May, when I showed up with stabbing head, neck,…
If You Feel Like Something is Wrong, Please Advocate for Yourself: Nicole’s Story
On October 27, 2024, I was diagnosed with cerebral venous sinus thrombosis (CVST). There was a large blood clot taking up the transverse and sigmoid portion of the venous sinus of my brain. I am still dealing with some neurological deficits. My symptoms started while I was working. Looking at the computer screen, numbers and…
