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Factor V Leiden

Don’t Ignore Calf Pain or Shortness of Breath: Scott’s Story

My dad had deep vein thrombosis (DVT) many years ago and was diagnosed with factor V Leiden. Because of this, I was tested and found to have inherited this mutation as well. Thanks, Dad.   In 2019, my calf was swollen and painful. The doctor sent me to get an ultrasound. It was a DVT. After…

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The Pain in my Lungs and Back Returned: Isabelle’s Story

My cousin, who was 22, died of a pulmonary embolism when I was 10 years old. At autopsy, she was found to have protein C resistance, explained by the factor V Leiden mutation. As this mutation is genetic, the whole family was tested. I was found to be a carrier of this mutation, and I…

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I Had Run 16 Miles the Day My Clot Was Discovered: David’s Story (with an update)

Update (July 29, 2024): I was excited to make my professional triathlon debut in Maine this past weekend, competing as the only athlete in the field with Factor V and needing to take blood thinners twice a day. It was a non-wetsuit swim, and I was really happy with my bike split on one of…

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Knowledge is Power: Stephanie’s Story

When I was eight months pregnant, my grandmother passed away. My blood pressure began to spike, and I was diagnosed with gestational hypertension.     I ended up being induced at 37 weeks in order to keep the baby safe. The night I delivered my daughter, my dad went into cardiac arrest. He passed away a week…

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Make Sure to Move Around After Surgery: Jake’s Story

I had abdominal surgery in July 2020 and had a difficult recovery. I could barely move. On Sunday, October 18, 2020, I woke and showered. I was home alone — my wife was visiting her brother. While climbing the stairs back to our bedroom, I became extremely short of breath.   Despite that, I made my…

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Nurses Say I’m a Miracle: Marcus’ Story

I am a 39-year-old Native American. I have had 23 pulmonary emboli (PE) and 31 incidents of deep vein thrombosis (DVT) starting at age 22, caused by the factor V Leiden mutation. I also have congenital protein C and S deficiencies.   Nurses say I’m a miracle and call me a medical anomaly. Doctors ask…

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Not Just Calf Pain: Kayla’s Story

During the summer of 2012, I was going into my senior year of college and was training for Kent State’s Annual Black Squirrel 5k Race. I grew up playing soccer and I figured running a 5k would be a breeze. Little did I know, it was going to change my life forever. I was up…

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Blood Clot Survivors Can Do Anything: Ashley’s Story

In December 2013, I joined a local gym after just moving to a new area. I spent a lot of time doing group classes and walking on the treadmill. One day while I was walking, I looked down and noticed some swelling in my lower left leg. I figured the swelling was just from the…

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A Family Affair: Kathy’s Story

“I have shortness of breath.” This was the oft-repeated comment to each of my doctors. I was diagnosed with breast cancer in April 2020. By August 2020, I had major surgery that included three surgeons: breast cancer surgeon, thoracic surgeon, and plastic surgeon. This was followed up by 30 rounds of radiation. I also complained…

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My Doctor Said I Was Fine, My Intuition Saved My Life: Chriselda’s Story

During my first pregnancy at 15 years old, I started to have intense burning and numbness on my left side groin and hip region that my OB/GYN stated was normal pregnancy pain. After giving birth, I followed up with my primary doctor and neurologist. All of my doctor’s visits concluded with no diagnosis. My second…

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