Factor V Leiden
I’m So Happy to be Alive: William’s Story
I got home from work and found it very painful to walk up the stairs. It felt like I pulled my groin. The next day I was supposed to see my mom for her birthday, but I could not get out of bed because I couldn’t move my legs. My mom told me to call…
Everything Can Change in the Blink of an Eye: Courtney’s Story
On September 30, 2023, I was driving up a mountain to a fall festival near my home in West Virginia with my husband and parents when I began having difficulty breathing, and my heart started racing. By the time we stopped, I could not breathe deep enough and almost passed out. I had to sit…
I Waited Until the Pain Was Unbearable: Taylor’s Story
It started on a Tuesday with mild lower back pain. I assumed that I’d strained something somehow. By Wednesday, the pain was slightly worse, and I felt weak, short of breath, and dizzy when standing—something definitely wasn’t right. By Friday, the pain spread to my left groin and down my left thigh. I convinced myself…
We’ve Become Advocates for Awareness: Nick’s Story
As told by his mother, Amy My son Nickolas first developed superficial blood clots after fracturing his leg in 2019. He took baby aspirin and had no issues after his leg was healed until the fall of 2020 when he developed the blood clots again. He had no trauma to cause them. He went to…
He Spread Kindness Everywhere He Went: Finley and Veronica’s Story
As told by Finley’s mother, Veronica Finley had been diagnosed with factor V Leiden homozygous in May 2023. I asked for him to be tested due to family history. No one explained his diagnosis to us, nor was it given any credence when brought up at doctor appointments. In June of 2024, in the height…
I Live with Both APS and Factor V Leiden: Eloise’s Story
It was December 2020, and I was about four weeks pregnant. I spent a lot of time lounging on the sofa during the festive break. One day I noticed my arm began to feel tight and stiff, but I put it down to my lounging and holding my phone. Around a week passed and my…
Continued Shortness of Breath Two Years After My PE: Shara’s Story
On New Years Day 2023, right as I was getting ready for bed, I started experiencing what felt like a strained muscle in the middle of the right side of my back. I briefly mentioned it to my partner as we were going to sleep but I didn’t think much of it until the next…
I’m Thankful to be Alive and Healthy: Jamison’s Story
I was 19 years old and home from college. I got what we thought at the time was a stomach virus. My mom took me to the doctor, but the symptoms persisted. After about a week, she decided we needed to head to the emergency room. We when arrived, they informed us that my heart…
I Continue to be Gaslit: Stephanie’s Story
When I was around 23, I started to go to the doctor complaining about persistent, enduring headaches. I was told it was stress. I went to the optician, where I was immediately sent to the emergency eye hospital. I had idiopathic intercranial hypertension, which was causing vision loss due to my optic nerves being forced…
Be Informed About Your Clotting Risk: Abby’s Story
On December 19, 2024, I noticed that my right thigh hurt and was discolored (purple-ish) but dismissed it, thinking that it was just bad circulation that would go away. Later that night, I felt extremely light-headed, my vision went dark and almost passed out. My mom and I rushed to the hospital because something was…
