My Introduction to Antiphospholipid Syndrome

EDITED APS living with

 

My experience with Antiphospholipid Syndrome—APS—began thirteen years ago with the cataclysm of a stroke. As the new year opened, I was 48 years old and the picture of health: a trim, fit, non-smoker with perfect blood pressure and no obvious risk factors any disease I knew of. I had a challenging consulting practice in marketing and public relations.  My grandparents and great-parents had lived to healthy old age; I imagined that would be my future, too.

Then—out of the blue—I was slammed by a full-on a stroke. On that eerie morning when the stroke hit, I was lost in a mental whiteout, unable to remember my address, my husband’s name, or how to dial 9-1-1. I had no idea what was wrong. Alone in the house and profoundly confused, but not yet panicked, I managed to get help by dialing “O” for an operator. The terror set in when I tried to speak and realized my words were nothing but gibberish. My heart thumped. Oh, God. She’s going to hang up. She must think I’m a kid playing with the phone, or a crank, or a drunk. Instead, the operator traced the call and sent an ambulance.

When the paramedic told me he thought I was having a stroke, I thought he was nuts.

Of course I’m not having a stroke, I wanted to tell him. Strokes are for the elderly, for smokers, for overweight couch potatoes. I’m forty-eight years old, fit, and perfectly healthy. Perfectly healthy people don’t wake up one morning and have a stroke. But the words were trapped in my head.

At the hospital, the ER neurologist was also stumped. She’d learned that I was taking birth control pills, which can be a risk factor for stroke. But when all my tests of heart and lung function were normal, she still wasn’t satisfied. Somehow she doubted birth control pills told the whole story.

Three weeks after the stroke, she sent me to a hematologist who, after more blood tests and a very detailed health history, diagnosed Antiphospholipid Syndrome­–APS–on the spot. How? For at least 20 years, he told me, I’d had subtle symptoms that pointed to an autoimmune illness and APS.

Over the next few weeks, as part of APS Awareness Month, I’ll talk about my own experience and what the experts have to say about:

  • What is APS?
  • APS symptoms
  • How APS is diagnosed
  • How APS is treated
  • Resources for APS patients
  • Blood thinning: it’s more complicated than it looks
  • Living with Coumadin
  • Why I rejected the new blood thinners like Xaralto.

 

I hope you’ll check back. And, if you or someone else in your life has APS, I’d love to hear about your experience.

Tomorrow: What is APS?