Story about Antiphospholipid / Hughes Syndrome .

Second occurrence diagnosis

Jun 19, 2017


I had a DVT and bilateral PE in 2010. I had so many clots in my lungs the doctors stopped counting. They told me it was a miracle that I survived and that I was even luckier to have survived without suffering a stroke or heart attack.

I was tested for genetic clotting disorders then and cleared. The clots were attributed to birth control use. I was on warfarin for 6 months and was taken off after that (and told no more birth control ever again).

I had a second occurrence of DVT and bilateral PE again in 2015. I received genetic testing again and was diagnosed with APS as well as "too much" factor 7 (which is basically the opposite of hemophiliacs - who don't have enough factor 7). I started Xarelto and am told I'm on it for life. 

I struggle daily with these issues and some other health problems. I often can't tell which disease/syndrome is the source of my problem at any given moment. 

I have PCOS (which is why they put me on birth control to begin with), ADHD, anxiety, depression, chronic pain, arthritis, and I am a trauma survivor, which I've learned affects your physical health in many ways, not just your mental health. 

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