Why You Need to Know about Antiphospholipid Syndrome—APS

burgundy_ribbon 2 enhancedWhen I was diagnosed with antiphospholipid syndrome in 2001, I  felt like I’d fallen into a bad sci-fi movie. I’d never heard of APS; even most of my doctors had never heard of it. I had a hard time finding information about it. There was no “national society of …” The best source of information I found was NORD—the National Organization for Rare Disorders.

Although APS is still listed in the NORD system, it turns out that APS really isn’t rare. At the time, 13 years ago, it wasn’t very well known. But research and increased awareness have greatly expanded our understanding of APS.

The reason you should care is simple:

Antiphospholipid Syndrome—APS—is dangerous and much more common than first thought.

 

It’s now estimated that one to five percent of the general population has APS.

That’s about two to six million women in the US, comparable to the number of women living with cancer.

There is now an organization, The APS Foundation of America—founded in 2005—that promotes antiphospholipid syndrome education, public awareness, research, and patient services.

These statistics from the APS Foundation of America demonstrate the seriousness of APS as a health problem—particularly, though not exclusively—for women:

  • One third of strokes occurring in people under 50 are due to APS.  Mine was one of those.
  • Estrogen in the form of birth control pills and hormone replacement–perfectly safe for most women–can be deadly for women with APS.
  • 15-20% of blood clots in large veins (deep vein thrombosis, including pulmonary embolism) are caused by APS.
  • 10-25% of women with recurrent miscarriages have APS.  If properly diagnosed and treated, many of them will be able to deliver healthy babies. That was not the case in years past. Undiagnosed APS is  the reason I was not able to have children.
  • APS is a major women’s health issue: 75-90% of those affected by APS are women.

 

The hallmark of APS is a tendency for blood clots to form when they shouldn’t. Patients who’ve had repeated blood clotting episodes should ask their doctors about testing for APS.

Learn more about antiphospholipid syndrome on my APS resources page.

But if you or someone you love has APS, don’t despair. APS is treatable, primarily with drugs like aspirin, Coumadin (generic warfarin), and other blood thinners.

Related Posts:

 

Coming up:

  • 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.