By B.L. Ochman
This post might save your life, or the life of someone you know. Please pass it on.
There’s an article in today’s New York Times (sub required) about the deadly risk of blood clots during and after flying. Like most articles on the topic, it cites a study saying that a certain percentage of travelers will develop deep vein thrombosis (DVT) during or within eight weeks of flying.
And like most articles, it misses the main cause – the generally undiagnosed or mis-diagnosed auto-immune disease Antiphospholipid antibody syndrome (APLS) aka Hughes Syndrome after Dr Graham Hughes, who identified the syndrome in 1983.
This condition – easily diagnosed by simple blood tests, affects millions of people throughout the world. The good news is that once diagnosed, the disease can, in most people, be treated, and further thrombosis (clotting) prevented.
I know that because APLS nearly very killed me. I don’t usually discuss issues as personal as my health online, but I’m fine, and you will be too, if you educate yourself about the real story behind blood clots and flying.
Web MD says, incorrectly, that “Antiphospholipid syndrome (APS) is a rare immunological disorder characterized by recurring blood clots.” It’s auto-immune alright, and it causes blood clots. But it isn’t rare. More people have APLS than have MS, but we don’t have a celebrity spokesperson so most people haven’t heard of it.
Another article notes: “Being stationary for a long time in any environment can lead to DVT, be it driving for long distances without stopping, sitting around watching television or spending too much time at a desk. Doctors in New Zealand have coined the term “e-thrombosis” for those getting clots from sitting for prolonged periods at the computer, as many IT workers and Internet users are wont to do.”
Scary! But wrong. You have to have an underlying disorder for blood clots to form.
The bottom line – nobody gets a blood clot – from flying, sitting in front of a computer all day, laying on the couch all day, or being holed up inside a tank in Iraq – without an underlying cause, and, in addition to heart disease, that cause is more than likely undiagnosed APLS.
If you have ever had a blood clot, you need to see a hematologist who specializes in clotting disorders. And, regardless of what you may have been told by a doctor unfamiliar with APLS, you need to be anti-coagulated for the rest of your life.
You will need to educate yourself, because doctors are generally clueless about APLS. Some places to start: the patient to patient forum, APLSUK, a Yahoo group and The Hughes Syndrome Foundation.
“More people have APLS than have MS, but we don’t have a celebrity spokesperson so most people haven’t heard of it.”
APLS has a celebrity spokesperson now! Get get ’em, BL!
Glad you didn’t die. :)
Mike – i’m almost certain that Jesse Ventura, who resigned from politics after his third or fourth pulmonary emboli; and Sharon Stone, who has had a couple of blood clots to the brain, and even Hilary Cilton, who had a humongo blood clot in her leg, actually all may have APLS, adn that each of them would make a great spokesperson.
I would, however, love to have someone back me to do an online campaign to raise awareness of APLS.