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I Went in Circles for Years Trying to Get Answers: Cassandra’s Story

I had my first deep vein thrombosis and pulmonary embolism at 18 years old due to May-Thurner Syndrome. My symptoms were left lower abdomen pain and fainting. I was told multiple times it was a miracle I was alive due to the clot burden. I spent 12 days in the hospital and had a temporary…

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I Thought I’d Pulled a Muscle: Madi’s Story

I remember going for a walk with my 10-month-old daughter the day I first felt the pain. I thought I’d pulled a muscle in my shoulder while pushing a heavy pram up a steep hill. Over a few days, the dull, sharp pain became worse. It felt like it was wrapping around my shoulder and…

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Recovery is Not Linear: Desiree’s Story

In April 2021, I was diagnosed with a cerebral venous sinus thrombosis. I was fortunate enough to have been diagnosed quickly following three days of headache, nausea, and vomiting. My risk factor was estrogen based oral contraceptives. This diagnosis has taken a physical and emotional toll, but I am thankful for where I am. I…

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The Doctor Didn’t Think I Would Live: Tabitha’s Story

It was one of the most exciting times! After six long weeks of wearing an air cast, I had just received news that I could get it removed. I told the doctor that my leg had been cramping, but he said it should subside once the cast was off and I moved around. Later that…

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Blood Clots in the Arm are Rare, But I Had One: Kiersten’s Story

About 15 years ago, my dad had a blood clot in his leg (deep vein thrombosis) and testing showed he had factor V Leiden. Since it’s a genetic disorder, my two sisters and I got tested. I tested positive for factor V Leiden as well as one of my sisters and one did not. So,…

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Water Aerobics Keeps the Swelling Down: Gus’ Story

I woke up one morning in 1978 to find that my right leg was swollen to twice its size. I called my doctor, who told me to come in immediately. He pressed his thumb into my ankle and created a ½-inch dent to show me how swollen I was and sent me to the hospital.…

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Always Speak Up For Yourself: Lucia’s Story

I was nine weeks pregnant when I woke up on Dec. 24, 2022 with a pain in my back that radiated to my right side, under my ribs. The pain intensified in the evening and I had shortness of breath. At the ER, I was dismissed as having back pain and given pain medications. Six…

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It Took Me Weeks to Come to Terms With My Diagnosis: Sharon’s Story

I started to feel pain under my left shoulder blade and thought I had pulled a muscle. I iced it and it started to feel better. But the next day, I woke up feeling worse. The pain had expanded around my rib cage on both sides, making it challenging to breathe. I went to work…

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I Live Every Day Freely, With Love and Intent: Egypt’s Story

After walking up five flights of stairs to a friend’s Manhattan apartment, I rested at the top of the staircase. It took me almost 15 minutes to gain control of my breathing. I chalked it up to the extra pounds I had gained. A few days later, my bottom lower right extremity began to swell…

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My Only Risk Factor was an Estrogen-Based Birth Control Patch: Stacy’s Story

On May 22, 2022, I woke up and had breakfast with my family. As I was getting ready for my day, I felt dizzy and weak, then I fainted. When I woke up, I projectile vomited.   I eventually made it to the shower. When I got out, I was still feeling weak and dizzy. The…

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