Get the scoop on APS, the clotting disorder than caused my stroke

I was slammed out of the blue ten years ago by a stroke that could have been prevented if I’d know the facts. Don’t let that happen to you or someone you love. Today, June 9, is APS awareness day – APS, the acronym for Antiphospholipid Syndrome, the blood clotting disorder that caused my stroke. It’s a great day to start learing the facts.

I remember feeling like the doomed heroine of a bad sci-fi when I first learned the cause of my stroke – 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 never heard of APS.”

 APS can be life threatening.

Here are the facts:
• APS is a blood clotting disorder. In patients with APS, the body releases antibodies that cause the blood to clot when it shouldn’t
• As a result, APS is a common cause of miscarriage, blood clots in the legs (deep vein thrombosis), the lungs (pulmonary embolism), heart attack, and stroke.
• It’s also an autoimmune disease. Like lupus and other autoimmune diseases, APS can “flare” at times, causing weakness, fatigue, achy muscles and joints, especially when we’re are tired or stressed.
• APS is sometimes found in conjunction with other autoimmune diseases, particularly as lupus.

You may not have heard about APS, either, but you need to know.

Here’s why:

• 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.
• It’s estimated that 15-20% of blood clots in large veins (deep vein thrombosis, including pulmonary embolism) are caused by APS.
• Some 10-25% of women with recurrent miscarriages have APS. If properly diagnosed and treated, many of them can have healthy full-term babies.
• APS is a major women’s health issue: 75-90% of those affected by APS are women
• APS isn’t rare. It’s estimated that one to five percent of the general population has APS.

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

Awareness is growing. When I started trying 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.

My resource page  has further information about APS. Even more information is available from  the APS Foundation of America as well as trusted medical sites like the Mayo Clinic, the the National Institute of Neurological Disorders and Stroke (NINDS), and APS now even has its own Wikipedia page.

There are also several on-line support groups:  the Antiphospholipid Syndrome International Support Group (APLSUK) based in the UK, and APS-Syndrome, both run through YAHOO, and the  support forum sponsored by the APS Foundation of America.

Be informed and share information about APS with the women in your life.