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Protein C deficiency

My Life Is Not the Same: Lisa’s Story

I remember how excited I was. I was five months pregnant with my son. I had just started feeling him kick and move and I was busy planning the nursery, clothes, pictures, and working. When I left work on a Friday, my left leg was heavy and I was dragging it. Over the weekend my…

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I Suffer from Anxiety and PTSD Now: Louise’s Story

On January 1, 2002, I woke up feeling like I had a weight on my foot and was dragging my leg. As the morning went on, my leg felt like it was double the size of my right, and I was in pain. My husband took me to the emergency room.   The doctor believed I…

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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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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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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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Remember You Are Brave, Resilient and Strong: Noelle’s Story

I believe that our daily hustle and bustle, which society has pressured us to believe is normal, convinces us to think that obligations are more important than the health and wellness of our own bodies. Ironically, being a doctorate student unintentionally embodies that notion as curriculum piles up to what eventually feels like an unfathomable…

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Take Control and Take Steps to Prevent Blood Clots: Ashley’s Story

My name is Ashley, and I was diagnosed with factor V Leiden, protein S deficiency, and protein C deficiency in March 2017. I was a waitress at the time, and I had just torn my shoulder due to a weight lifting accident. So, I started running outside a lot to stay active before I had…

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I Had Three PEs: Kirsys’ Story

For all of my life, I have struggled with my weight. When I was 23 and 346 pounds, I decided to get gastric bypass surgery. That is when my nightmare started.  After the surgery, I followed my doctor’s orders to walk as much as possible. However, I started experiencing chest pain about a week later…

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Repeatedly Misdiagnosed: Kathy’s Story

My name is Kathy and I survived pulmonary emboli in 2003. I remember as young as 12 years old feeling pain in my chest. When I asked in 1979 it was dismissed as growing pains. When I asked a doctor in 1989 I was told it was panic attacks. I spent years thinking that I…

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Misdiagnosed Repeatedly: Cheryl’s Story

I noticed I had a cough that would not go away in November 2007. I knew it wasn’t a cold, because I didn’t have any other symptoms of a cold.  I went to my doctor the next month, and she couldn’t identify a cause.  She suggested that I try allergy medication for a week, but…

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