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APS

My APS Diagnosis Got Lost: Dione’s Story

In 1994, I had my son prematurely at 24 weeks. They did a bunch of testing and found out that I had antiphospholipid syndrome (APS). I had another preterm baby at 25 weeks three years later. I was followed by a high-risk OB/GYN at the time but no other preventative measures were done while pregnant.…

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Doctors Will Gaslight You Into Believing You’re Crazy: Kourtney’s Story

I was diagnosed with a DVT and bilateral pulmonary embolism on April 10, 2024. I underwent a biopsy for a uterine cyst in November 2023 and subsequently had my menstrual period for almost 30 days. My gynecologist prescribed me birth control to stop my period. From mid-January until April, I was taking four birth control…

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If You Aren’t Happy With the Answers, Keep Pushing: Ria’s Story

In April 2023, I had a spontaneous seizure at work. I was taken to the hospital and stayed for 10 days. On day 8, I had a lumbar puncture (also known as a spinal tap) to try and find the cause of the seizure. The following day, I woke up with an intense, sharp, left-sided…

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Monitor Your Own Vitals: Jamie’s Story

It was June of 2023. I was five days postpartum when I started to get really erratic blood pressure readings. It would go from 177/206 to 123/79 within minutes, up and down like a roller coaster. I was also having palpitations and I remember telling the doctor later that I had a twinge of pain…

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I’m Proud of How Far I’ve Come: Juliana’s Story

Less than two days after giving birth to her first baby, my aunt died of blood clots in her lungs and heart. I was 13 at the time and the news shocked the whole family. Two weeks after her funeral, I had some strange leg pain. I thought I had pulled a muscle or injured…

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I Now Live My Life to the Fullest Every Day: Meghan’s Story

In April 2022, I was a normal 18-year-old preparing for graduation and college. My world would soon flip when I was diagnosed with a DVT that went from my hip to ankle. I was an active high schooler. I was a part of the varsity cheer team and marching band. When the pain in my…

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My Teen Suffered a PE After Surgery: An Anonymous Parent

My family has an extensive history of DVTs and PEs leading up to my teen’s blood clotting episode. I have three grandparents with confirmed clots, one of whom had a filter placed. One of my parents and their sibling both had multiple clots. My teen had spinal fusion with rods for scoliosis, and because of…

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I No Longer Live in Fear of Another Re-Clot: Staci’s Story

In July 2018, I developed a nagging dry cough and chest discomfort. I have a history of pneumonia, so I went to urgent care for a chest x-ray. It was clear and I was told I likely have a viral chest cold. The cough continued to linger on, not responding to over-the-counter cough medicine. As…

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Don’t Ignore Symptoms of a Blood Clot: Marvin’s Story

In 2017, I was having redness, warmth, pain, and heaviness in my right leg. I was 17 at the time and I had just begun my senior year in high school a few weeks before. I was in school when I first saw that my leg was red, and I made a mistake by not…

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Life is a Gift and it’s Fragile: Cara’s Story

I was in my early 30s and enjoying life as a new mom, but I had been having a rough time for nine weeks, experiencing severe headaches and aphasia. I was worked up by a neurologist thoroughly and had all kinds of tests and scans — an MRI, MRA, an EEG — and everything was…

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