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TJ Wolf

Life With Lupus: Antiphospholipid Syndrome


Life With Lupus: Antiphospholipid Syndrome
Image of blood cells.National Cancer Institute/Unsplash

About The Author

I have the serious and deadly disease known as Lupus.

  • The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE).
  • True to its name, SLE is a systemic condition throughout the body.
  • In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.


This article is not intended to be medical advice.

The article is simply my own story as someone with SLE and excerpts from other articles I've studied.

As always, you should consult medical professionals with regard to your own health and decisions.
Picture of a human heart model.Jesse Orrico/Unsplash

Anti-Phospholipid Antibody Syndrome (APS)

Per WebMD, APS is defined as...

About 1% to 5% of people in the United States have misbehaving antibodies (proteins) in their blood that can lead to APS. Normal antibodies fight infections, but with this condition, things called “autoantibodies” attack certain fats that help with blood clotting. And so your blood starts to clot abnormally.

APS antibodies can sometimes cause:

  • Blood clots, which can lead to heart attack, stroke, or pulmonary embolism
  • Miscarriages and other pregnancy complications
  • Low platelet levels in your blood
  • Rashes and skin ulcers

(about half of people with lupus also have APS)
Picture of six vials of blood for laboratory testing.National Cancer Institute/Unsplash


I've tested positive for anti-phospholipid antibodies 4 times (which equates to 100% of the times I was blood tested specifically for those antibodies).

Per my physician I've met all the criteria except full blown stroke, observed clot, or deep vein thrombosis (DVT). Given my Transient Ischemic Attack (TIA or mini stroke) history, my physician was confident in the "hypothesis diagnosis" that I have APS.

And given the final “criteria” to meet a true diagnosis can be catastrophic and fatal (stroke, clot, or DVT), I’m good with only the hypothesis!

As for treatment, my standard Lupus regimen of medications contains 2 medications that also address the APS and aid in blood thinning.
Picture of a Fire Department of New York (FDNY) ambulance driving in a snowstorm.Valeriia Kogan/Unsplash

Catastrophic Anti-Phospholipid Syndrome (CAPS)

The most severe and rare form of Anti-Phospholipid Antibody Syndrome is Catastrophic Anti-Phospholipid Syndrome (CAPS).

Per the National Organization of Rare Disorders (NORD) website, CAPS is also referred to as…

  • Catastrophic antiphospholipid antibody syndrome
  • Thrombotic storm

…and defined as…

In CAPS multiple blood clots form throughout the body over a short period of time (usually within a week). CAPS is a medical emergency, as clots can cause life-threatening multi-organ failure. The cause of CAPS is unknown. A widely accepted explanation is that it is caused by a
combination of gene mutations (making one more susceptible to CAPS) and
an environmental trigger, such as an infection, trauma, or surgery.

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