Misdiagnosed
My Commitment to CTEPH Awareness: Harry’s Story
The Road to Diagnosis As far back as my teenage years, I had experienced chronic shortness of breath. This worsened in my twenties and thirties as new symptoms emerged, including occasional chest and arm pains and general exhaustion. Over the years I sought the opinions of countless doctors, leading to misdiagnosis after misdiagnosis, …
Know Your Blood Clot Risk Factors: Nicole’s Story
In May of 2021, I dislocated my ankle. I was also on hormonal birth control. After the ankle injury, I was told to go home and rest, and not to bear weight on my ankle for 4-6 weeks. After about a week and a half, I had intense pain and cramping in the calf of…
I Felt Like No One Was Listening to Me: Natalie’s Story
A few days after my fourth daughter was born, I went to the emergency room for terrible leg pain. They did an ultrasound and assured me I did not have any blood clots. I went back again for a second time because I was certain I had a blood clot. Again, they sent me home…
The Emotional Toll Has Been Challenging: Jenna’s Story
In September 2020, at the age of 24 and in good health, one week away from graduating with my master’s degree, I nearly lost my life. I woke up one day with a headache slightly worse than normal. Over a week, things got worse until I was in more pain than I had ever experienced…
My Right Arm Was Double the Size of My Left: Robyn’s Story
My mum saved my life. I was diagnosed with upper extremity deep vein thrombosis (DVT), or a blood clot in my arm, in late June 2019. I started showing signs and symptoms at the beginning of the month. I was 26 years old, had a 9 to 5 job, and loved going to the gym.…
My Doctor Said I Was Fine, My Intuition Saved My Life: Chriselda’s Story
During my first pregnancy at 15 years old, I started to have intense burning and numbness on my left side groin and hip region that my OB/GYN stated was normal pregnancy pain. After giving birth, I followed up with my primary doctor and neurologist. All of my doctor’s visits concluded with no diagnosis. My second…
My PE Gave Me a New Perspective on Health Inequities: Vanessa’s Story
At 15 years old, I began taking hormonal contraceptives to relieve migraines. I received my prescription quickly after a brief medical exam where I was asked about my family history. I never imagined my journey on hormonal contraceptives would end abruptly nine years later after an emergency room diagnosis of bilateral pulmonary emboli, or bloods…
I’m Still Struggling After Months of Recovery: Melissa’s Story
I went to the ER in April 2020 with severe pain in my right chest and back area. I couldn’t lie flat, or take any deep breaths, like coughs or sneezes. I couldn’t bend forward to pick anything up, and I was getting fatigued from the pain. It had gone on for three days before…
Seeking A Second Opinion Saved My Life: Kathleen’s Story
In 2016, life was normal. I was balancing a full-time desk job, motherhood, and the excitement of a second pregnancy. However, around 32 weeks into my pregnancy, things started to take a turn for the worse when I developed pain in my left hip. Worried, I went to the doctor, who, without fully examining me,…
My Lifelong Experience with FVL: Gemma’s Story
I was diagnosed with the genetic clotting disorder factor V Leiden when I was 15 years old. My aunty (my dad’s sister) had a blood clot during pregnancy and she learned she had FVL, which led to members of my family, including me, being tested for it too. While growing up, FVL never had any…