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Misdiagnosed

Use This As Your Reason to Live: Tilly’s Story

It began with excruciating back pain and shooting pains up my left leg. I felt unable to walk. The week that I noticed my first symptoms, I was back and forth to urgent care and the doctors. They kept saying the same thing, “You have nerve damage” (sciatica). They gave me painkillers and told me…

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We Must Be Advocates for Ourselves and Our Family Members: Marcus’ and Shannon’s Story

As told by his daughter, Shannon In April 2024, my father, a retired police lieutenant, was diagnosed with duodenal cancer. He was unable to have the tumor removed and was undergoing chemotherapy. In late August 2024, he started complaining about being dizzy and lightheaded. He went to his primary care provider who told him that…

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I Was Blown Away By the PTSD I Felt: Donna’s Story

On Christmas Eve 2023, I slipped on ice and broke my kneecap. I spent eight weeks in a splint and kept my leg elevated. Two weeks later, I experienced shortness of breath and chest pain suddenly. I went to the ER and was diagnosed with a submassive bilateral PE with right heart strain. I spent…

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I Dealt With Pain and Swelling For Five Years: LaVon’s Story

After leaving the gym in 2017, I experienced the worst pain imaginable in my right leg without having an injury. I thought maybe the pain would leave after icing and elevating it. But, as the day went on, the pain and swelling worsened to the point I couldn’t stand or walk on it. I went…

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I’m More Mindful: Lainey’s Story

I was being evaluated for chest pain by a pulmonologist who was treating me with opioids. The night before my diagnosis, I was participating in a group yoga class where I won a T-shirt for sweating the most. I had pools of sweat under me like it was a Bikram class, but the A/C was…

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Being Faced With Your Mortality is Life-Changing: Casper’s Story

Not long after I turned 21, I started to notice the veins on the left side of my chest becoming extremely prominent. My left arm felt like it was falling asleep constantly throughout the day. It was strange, but I just assumed I had pulled a muscle or slept on it wrong. I didn’t feel…

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My Clot Started 10 Years Before It Was Found: Jana’s Story

In December 2022, I had the worst pain in my life in my left side of my buttocks after working out. Being a physical therapist and a retired high-level figure skater, I assumed I had strained a muscle until I was unable to walk or bear weight on my left leg. After three ER visits…

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It’s an Ongoing Battle to Stay Well and Manage This Life Condition: Callum’s Story

At 29, I considered myself to be fit and almost indestructible. I don’t smoke, I don’t drink and I have a myriad of athletic accomplishments. I’ve run multiple marathons, I’m at a healthy weight, and I train in the gym regularly. All of the above left me feeling completely lost when I started to experience…

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I Can Be a Survivor and Have a Life After This: Paula’s Story

My experience was in the summer of 2021. I woke one Sunday morning feeling shortness of breath, and I continued my day with increasing difficulty breathing. On Monday, I went to an urgent care clinic. They did not do a CT scan, they assumed because I was overweight and out of breath that it was…

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Be Your Own Advocate: Jo Anna’s Story

My first pulmonary embolism was on August 15, 2015. I was on birth control for irregular cycles and began having pain in my lower right side, which I thought was a pulled muscle. A week after the symptoms, the pain was unbearable. I went to the ER and was diagnosed with a right lung pulmonary…

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