Patient Stories

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.…

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,…

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’m a 63-year-old man and have experienced two instances of blood clots (deep vein thrombosis, or DVTs) in my left calf. The first happened in 2018, shortly after being diagnosed with stage one lung cancer. I had surgery to remove the lower part of my left lung and followed regular scans for five years before…

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 told by Allen’s daughter, Stephanie.  My dad had suffered from multiple health disorders, including A-fib, asthma, high blood pressure, high cholesterol, and chronic cellulitis in both legs. I had been visiting him because he needed a lot of assistance. One day in February 2024, I couldn’t reach him. I went over to his apartment…

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…

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…

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…

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…