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Protein C Deficiency Often Has No Symptoms: Alicia’s Story

I will never forget February 18, 2022. At the time, I was a healthy, active 30-year-old, training for my seventh half marathon. Two nights before, I had developed chest pain and shortness of breath. I wrote off the chest pain as a pulled muscle from lifting and dismissed the shortness of breath as anxiety.    But…

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‘Am I Going to Die?’: Christopher’s Story

I had an injury to my forearm in June 2022. Less than a week later, I started getting severe chest pains. I was taken to the hospital with c-reactive protein test (CRP) markers of 93 and was sent home with antibiotics.   A week later, I experienced the same pain, but worse. This time a CT…

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I Appreciate Good Health More Now: Susan’s Story

Turning 50 was no big deal to me. I was healthy, happy, and active. But a few months later, I was diagnosed with five life-threatening blood clots in my lungs, along with a large infarct — a small area of dead tissue resulting from the failure of blood supply – at the base of my…

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What Affects Me Most is the Anxiety: Jocelyn’s Story

I started to get sick very frequently around March 2019. I was having terrible colds and coughing all of the time. A few months later, I started having difficulty climbing stairs and couldn’t even walk without developing shortness of breath and feeling like I was having a heart attack.    I went to my primary care doctor…

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Michael Walker in a hospital bed on January 14, 2022 and healthy on January 22, 2023

The EMTs Had to Get Me Off the Floor: Michael’s Story

One week before my diagnosis, I noticed I was getting weak. Not weakness from being tired, but unusually weak without cause (I thought).   I also had a nagging cough and was constantly clearing my throat. I began to presume that I had caught the coronavirus, so I started doctoring myself. After a few days, I…

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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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I Had a Blood Clot at 14: McKenna’s Story

When I was 14, I flew to my dad’s house in California to celebrate Christmas with him and my siblings. By the middle of the week, my left thigh was swollen, red, and hot and I couldn’t walk on it. I tried many things to get myself moving, but it hurt too much.   When I…

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No One Told Me What Was Going On: Cassandra’s Story

I am a 41-year- old woman. I was diagnosed with a massive pulmonary embolism (PE) and a large deep vein thrombosis (DVT), respectively, in my lung and left calf, in March of 2014. I had no idea what was going on. I was making my kids a snack and got so dizzy that it literally…

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The Older I Get, the Scarier it Gets: Brenda’s Story

In 1983, I began experiencing pain in my side, shortness of breath and coughing up blood. At the ER, I was diagnosed with pleurisy, which is inflammation of the tissues that line the lungs and chest cavity. I was only 17 years old. Two weeks later, I began having pain in my left groin and…

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We Lived in the Hospital for Six Months: Luca and Mousumi’s Story

My son Luca is 16 years old and has a rare clotting disorder called protein C deficiency. Doctors initially thought it was a bleeding disorder, but it turned out to be a clotting problem. He forms micro-clots that use up the clotting factors, which causes internal bleeding.  It started just before Luca turned two years…

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