Patient Stories
UPDATE – Thrombosis Has Deeply Impacted My Family: Gerry’s Story
In February 2023, Gerry shared his family’s serious challenges with blood clots. He’s now updating it to reflect significant new results from the genetic research project his family is doing with Yale Smilow Cancer Center. Gerry’s presented his family’s story to five Senate/House committee staff as part of Capitol Hill Day on March 6, 2024…
Life is a Gift and it’s Fragile: Cara’s Story
I was in my early 30s and enjoying life as a new mom, but I had been having a rough time for nine weeks, experiencing severe headaches and aphasia. I was worked up by a neurologist thoroughly and had all kinds of tests and scans — an MRI, MRA, an EEG — and everything was…
Listen To Your Body: Mariah’s Story
I was 25 when I was diagnosed with deep vein thrombosis and a pulmonary embolism. When I first noticed something was abnormal I was getting off from work and I saw significant swelling in my leg below the knee to the tip of my toes. My calf was so large that my pants were too…
This Experience Helped Me Find My Love For Medicine: Zoe’s Story
Three days after my 18th birthday, I experienced severe swelling in my left leg. I assumed I pulled a muscle as I went ice skating on my birthday, but that soon changed. I went to school as normal and my teachers and friends noticed that my leg was purple and three times the size of…
Paramedics Assumed It Was Anxiety: Christina’s Story
As told by her mother, Darla My daughter, Christina, suffered a broken foot on January 6, 2015, just two weeks after her 30th birthday. The podiatrist put her in a walking boot and gave no restrictions. Christina then developed calf pain and went to the ER on January 10, 2015. The ER sent her home…
Do Not Ignore Anything, Even if You Feel Like it’s Nothing: Eilidh’s Story
A few days before my collapse, I felt a little out of breath when moving around. However, I had just got back from travelling around Thailand and I also had a sore throat, so I assumed I was just a little run down. I was wrong. On March 22, 2023, I walked down the stairs…
I Developed Two More PEs While Hospitalized: Sarah’s Story
I took poorly at the end of March 2018 with what I thought was a chest infection. I was prescribed antibiotics, but I was gradually getting worse. The doctor then started me on treatment for pneumonia. I was still feeling very poorly, though, and when I coughed up blood, I went to A&E (emergency room…
It’s Better to be Safe Than Sorry: Kyarra’s Story
As told by her mother Star My beautiful daughter knew she wanted to be a mom when she was in kindergarten. In May 2022, when she 23 years old, she gave birth to her daughter. Due to some medical issues, she had she ended up having an unplanned C-section. Three weeks to the day of…
Recognize the Signs of a Blood Clot: Othello’s Story
As told by his wife Tonia. On July 20, 2017, my husband Othello died from two big blood clots in both lungs (pulmonary emboli). We went to the hospital thinking he had developed adult asthma because his oxygen was lower and he had shortness of breath. The doctor advised that Othello would have to be…
My Mental Health Has Suffered More Than My Physical Health: Denise’s Story
In May of 2019, I began experiencing a dry cough. It continued to progress to the point where I could no longer hold a conversation without coughing every four words or so. I went to a family doctor who brushed it off as adult-onset asthma and allergies, gave me a chest X-ray, and sent me…
