Misdiagnosed
This Experience Changed My Entire Life: Kim’s Story
In September 2015, I was sitting in the ICU wondering how I had gotten there. Flash back to six months prior, I had severe depression and I weighed close to 300 pounds. I was also training for a 160-mile bike ride from Miami to Key West. During my training for this ride, I started experiencing…
This Needed More than a Tylenol Prescription: Ashley’s Story
At 31 weeks pregnant, I was getting ready for the arrival of my baby when I started experiencing extreme pain in my left leg. I remember going to my baby shower and barely being able to walk. This was very concerning, so after the baby shower, I called my OB/GYN and explained the symptoms I…
A Combination of Missed Risk Factors: Gina’s Story
In 2017, at 21 years old, I was undergoing my third surgery on my left knee after I had torn my ACL and meniscus playing college basketball. I was back on the court a few short weeks later, but felt that my hamstring was unusually tight. This didn’t seem right to me, so I decided…
Knowledge is Power: Sheila’s Story
On September 5, 2021 I woke up in the middle of the night with a cramping pain in my right leg, which didn’t seem like anything serious at the time. I woke up the next morning and carried out my usual routine, but the pain became unbearable so I decided to see a doctor. The…
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…
