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Blood Clotting Disorder: Antiphospholipid Antibody Syndrome

Updated on November 3, 2012

What is Antiphospholipid Syndrome?

Antiphospholipid Syndrome is one of many auto immunie diseases. It has several names including APS and Hughes Syndrome.

It is possibly an inherited disorder, no-one is quite sure as yet. My first manifestation was severe migraine headaches around my mid twenties. These went ignored by doctors at the time and stopped as quickly as they began. In 2001 when I was 40 years old, I bent over in a supermarket to pick up a can of beans and as I stood up, my vision blurred and I felt dizzy and got a headache. I ignored the vision problem for several weeks, until a cold and bronchitis took me to my doctor. As the consultation ended I mentioned the problem, he asked me to read a chart on the wall of his office with the affected eye. I couldn't see the wall.

He sent me immediately to a specialist eye hospital, they diagnosed a retinal vein occlusion, essentially a blood clot behind the retina. The eye was essentially dead and permanently blinded. The eye surgeon ordered blood tests and several weeks later reported I had Antiphospholipid syndrome and sent me to a Haemotologist. At first I was placed on an aspirin regime, but had several minor strokes, TIA's. So was placed on Wargarin in varying doses.

Even after nine years on Warfarin I have problems controlling dosages, my body rapidly adjusts to reductions of dose, this puts me rapidly at risk of further clots and damage, in 2008 during a low dose period I suffered a second Retinal Vein Occlusion which though treated quickly has caused me to lose most of my vision, this despite regular treatments of steroids injected directly into my eye.


Do Not Despair

 I know it can seem a devastating diagnosis, but it is not the end of the world.

Since being diagnosed in 2002, I have married and successfully completed a Bachelor of Arts Degree in History and Politics. I have travelled across the world and done things I had always wanted to try. All legal by the way. In short it does not place limits on anything other than driving and reading. The reading problem is easily my most problematic upset, but is solved by making friends at the local library to get me lots of good audiobooks.


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