Today, June 9, is APS Awareness Day. We need it. APS is the blood clotting disorder that gave me a stroke eight years ago.
I remember feeling like the doomed heroine of a bad sci-fi when I first learned the cause – an unpronounceable, incomprehensible disease: ‘Antiphospholipid Syndrome,’ or APS.
I’d never heard of APS. Nobody I knew had ever heard of APS, even most of my doctors had ever heard of APS.
Things are changing – slowly. The acronym – APS – helps. It’s hard to wrap the public’s mind around a disease no one can pronounce. Anti-phos-pho-what? was as close as my stuttery, stroke-damaged speech could get for the first year. APS is sometimes called Hughes Syndrome after the British physician who first identified it in 1983. Awareness is growing. When I started trying the disease to research APS in 2002, shortly after my stroke, the only information I could find was a booklet from the Hughes Foundation in England and Medline articles heavy on doctor-speak. Today, lots of information is available from the APS Foundation of America. There are also two on-line support groups.
In my eight years as an APS patient, I’ve slowly come to learn about the disease. Some bits I learned from my doctors, some I ferreted out in hours of toilsome on-line research, some I learned from vexing experience.
The stars of our disease are crusading antibodies – normally our bodies’ disease fighters – who swoop like Mongol hoards to cut down invading viruses and bacteria that threaten our health. But, unaccountably, in APS patients (and other autoimmune diseases as well) some of these antibodies get turned around. Lost in the muck, not finding intruders, they turn instead on ‘self’ creating an internecine war within our arteries and veins. That’s the essence of autoimmune disease – antibodies that mistake parts of the self for outside invaders.
In the case of our particular disease, APS, warrior antibodies aim their swords at fatty blood proteins (called phospholipids) that help regulate the clotting process. Thus the name “Antiphospholipid Syndrome” or APS. APS weakens the brakes of the clotting system. Instead of nicely flowing blood that clots only when injured, our blood turns into a viscous goo that oozes along like slurry and clots at the slightest opportunity. This tendency to goo and clot can wreak all kinds of havoc, from miscarriages to migraine to memory loss; from deep vein thrombosis (clots in the legs) to pulmonary embolism (clots in the lung), kidney disease, heart attack or stroke. Like many autoimmune diseases, APS is more common in women. For reasons not yet well understood, APS usually strikes under the age of about 50.
When my friends ask me about it, I tell them APS like the opposite of hemophilia. While hemophiliacs can’t stop bleeding, APS patients throw clots when we shouldn’t.
APS can be diagnosed with blood tests – but they’re tests that aren’t typically ordered until a patient has clear signs of a clotting problem – recurring bouts of phlebitis perhaps, or a series of miscarriages, usually at least three. If they’re lucky, APS patients find out they have the disease and start treatment before any major damage is done.
I, of course, wasn’t so lucky.
After my stroke, I learned that I’d had symptoms of APS for years – symptoms that in those days didn’t mean much. But they do today:
When I first joined the APS Foundation, I bought one of their T-shirts: I May Have APS, But APS Doesn’t Have Me. I liked the sentiment. I have APS, which caused a stroke. As such, I live the rest of my life at very high risk for another. I take high doses of the blood thinner Coumadin. With blood tests every 2 or 3 weeks, I try to hold myself teetering in that narrow range – blood thin enough to prevent another stroke, not so thin as to bleed.
But…While I’m doing that, I’m still traveling – to Burma and Botswana, Costa Rica and China and the wilds of Uzbekistan. I write about my travels on my blog JunglePants.com. I’m also finishing a book about my experiences of stroke, autoimmune disease and travel off the beaten path.
We want people to learn the symptoms of APS so the disease can be diagnosed early and managed before it wreaks havoc. We also want you to know than an APS diagnosis is not a sentence to the invalid’s couch.