APS
I Live with Both APS and Factor V Leiden: Eloise’s Story
It was December 2020, and I was about four weeks pregnant. I spent a lot of time lounging on the sofa during the festive break. One day I noticed my arm began to feel tight and stiff, but I put it down to my lounging and holding my phone. Around a week passed and my…
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…
My Pain Was Ignored For Almost a Year: Caitlin’s Story
I was diagnosed with my clot in February 2022 after a period of immobility recovering from a torn hamstring. I was unaware of any underlying health conditions, and the blood clot was seemingly out of nowhere. The medical professionals where I was living at the time placed me on blood thinners and left me to…
I Experienced DVTs on Three Occasions: Joanna’s Story
My first DVT was in July 1995, two weeks after the birth of my first (and only) child. I had a shooting pain in my left buttocks and rode an ambulance to the hospital with my newborn and husband. The ER docs did not seem to consider the possibility of a DVT and were looking…
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…
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.…
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…
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…
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…
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…