What is Antiphospholipid Antibody Syndrome?

What is APS Cover

June is Antiphospholipd Antibody Awareness Month. But, what is Antiphospholipid Antibody Syndrome, anyway?

If you’ve never heard of Antiphospholipd Antibody Syndrome (or APS), you are not alone although, the disease is not as uncommon as you may think – as people are tested for different blood clotting disorders after a clotting incident, more and more people are being found to have APS. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women and while APS is believed to be responsible as the cause of multiple miscarriages, thrombosis, young strokes (up to one third of people under 50) and heart attacks, it is rarely discussed as a relevant health issue, particularly for women. Still, just about 1% of the U.S. population is believed to have APS making it a rare and sometimes ignored condition.

So, what is it exactly? Antiphospholipid Antibody Syndrome is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. Antibodies are proteins in the blood and body fluids that bind to foreign invaders like bacteria and viruses and help the immune system destroy and remove them. Sometimes the immune system doesn’t function properly and makes antibodies against normal organs and tissues in the body or, in the case of APS, proteins in the blood. There are two known forms of APS. APS may occur in people with systemic lupus or other autoimmune disease, or in otherwise healthy individuals (Source: http://apsfa.org)

In people with APS, blood basically clots when it shouldn’t creating the potential for serious side effects such as DVT, PE, heart attack, stroke, aneurysm, etc. Women with APS may have difficulties with pregnancy. During pregnancy, women are at higher risk of developing blood clots and preeclampsia (high blood pressure). In APS, pregnancies are often lost because blood clots form in the placenta and starve the baby of nutrition. Some women may have trouble getting pregnant, while others may experience repeated miscarriages. Blood clots that develop in the placenta can cause fetal growth problems, fetal distress, premature birth, or pregnancy loss. Expert care and close monitoring of the pregnancy is essential by a doctor knowledgeable about APS or high-risk OBGYN (Source: http://apsfa.org).

APS is a lifelong disease, of which there is currently no cure. In general patients who have had a blood clot (i.e., stroke, heart attack, DVT, PE) and have persistently positive tests for antiphospholipid antibodies should be treated with anticoagulants (such as Warfarin) indefinitely. Discontinuing treatment after a fixed period of time, such as six months, is common after a clotting incident, but may be quite dangerous in APS patients. In some patients with a history of blood clots, antiphospholipid antibodies may disappear after a certain period of time, making them hard to detect during routine lab tests. It is not known whether it is safe to stop anticoagulation in this situation of transient antibodies. Consultation with a doctor experienced in treating APS, often a hematologist, is recommended for the treatment of APS (Source: http://apsfa.org).

APS is not only a difficult disease to understand, but difficult to explain to others as well. A person with APS may look exactly like they did before – on the outside. But, he or she is struggling internally with a disease that always has the potential to cause serious and life-threatening complications. That is not to say people with APS have to stop living normal lives, it just means they must be aware of what is going on in their body including paying attention to symptoms of potential blood clots, taking medication regularly as prescribed, following up with a doctor or specialist as recommended and taking care of oneself.

In terms of autoimmune diseases, APS is actually one of the more common ones, but is often not tested for or misdiagnosed by physicians. If you have suffered a clotting incident, please make sure the hospital (or your doctor) checks for things like autoimmune and hereditary clotting factors.

I was diagnosed with APS after my PE, thanks to the persistence of one hematologist who would not settle for birth control being the only contributor to my blood clots. After my diagnosis, I remember being very confused and unable to comprehend what the doctor was telling me. As time has gone on, I have found connecting with others has been the most valuable form of healing for me. I have also sought out as much information about APS as I can and while resources are limited at the present time, there are some organizations out there dedicated to raising awareness and spreading information about APS and other blood disorders. You can find my list of helpful resources below-

Resources for People Diagnosed with APS

  • APS Foundation of America, Inc. – Founded in 2005, The APS Foundation of America, Inc. (APSFA) is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS).
  • Antiphospholipid Syndrome Facebook Support Group – Antiphospholipid syndrome (or antiphospholipid antibody syndrome) (APS) is a disorder of coagulation, which causes blood clots (thrombosis) in both arteries and veins, as well as pregnancy-related complications such as miscarriage, preterm delivery, or severe preeclampsia. The syndrome occurs due to the autoimmune production of antiphospholipid antibodies (aPL). The name Antiphospholipid Syndrome is a misnomer because the target antigen of aPL is not phospholipids but actually plasma proteins that bind to phopholipids (eg: [[β2-glycoprotein 1]] or prothrombin). This is an open support group where we come together to talk about it.

Share your story. Have you been diagnosed with APS? Have you ever heard of APS? What is most troubling or interesting to you about the disease? Has APS changed the way you live your life?

There is hope for healing and you are not alone,



  1. Debbie Holliman says:

    Hello everyone, I was first hospitalized for a Portal Vein Thrombosis in July 2009. After a month and half in the hospital I was sent home on warfarin. I went in for routine blood work 6 days later and I was also given another CT Scan…the tests determined that I had developed 2.Moore clots (Mesenteric and Splenic Vein). Back into the hospital I went. The hematology treating me wanted to have the clots removed, but the vein specialist refused. At the time I didn’t ask why, figured they knew what they were talking about…I’ve learned my lesson some then. I spent a few more weeks in the hospitall and I was finally sent home on Lovenox shots twice a day. At the time, it was explained to me that the blood thinners would help dissolve the clots over time. After, 10 months of blood thinners, I had another CT Scan and I was informed that the blockages (clots) had not shrunk in size, so they would be their the test of my life. Within the years to come, I have been diagnosed with several autoimmune diseases, such as APS, HLA-B27, crohns, high levels of ammonia in my blood, gastric and esophageal varices, severe arthritis, and a long list of other health problems.

    I have not been able to really find a doctor that is really knowledgeable or cases to treat me…as a matter of fact, I’ve had doctors and surgeons refuse to treat me. It had become a very frustrating life. I’m very grateful that I did survive, but most days I feel overwhelmed. I would love to chat with anyone that is going through a similar situation.

    Regards, Debbie

    • Hi Debbie! Welcome and thank you so much for sharing your story. My thoughts are with you as you move through such a difficult diagnosis. I can really relate to how you are feeling. I also have APS and some other autoimmune concerns that seem to make things very difficult. It gets really tiring always feeling and being sick. I am sorry you are having trouble finding a doctor, as I know that is very, very frustrating. I was fortunate enough to find a hematologist who specializes in APS and he handles most of my treatment. I hope you can find a doctor.

      If it gives you any comfort, it is normal for blood clots to NOT dissolve, mine hasn’t after two years and blood thinners are not designed to dissolve clots at all. The only thing that can dissolve a clot, per my docotr, is your own body so it may be that your body has just decided it will not dissolve that clot. It may work around it or through it. It is considered normal that it is still there, though.

      Are you on Facebook? You may find support in our private group – https://www.facebook.com/groups/BloodClotRecoveryNetwork/

      Take care and thinking of you. Wishing you a lovely Thanksgiving too.

      • Debbie Holliman says:

        Thank you. First off, it’s I have joined the Facebook page. I have thought about positing on their, to see what kind of help or feedback I could get.
        Next, I was never told clots usually didn’t dissolve. I actually have a huge clot, fully blocking my portal vein. After a month and half in the hospital, I was sent home on warfarin. Within 5 days, I was rushed back into the hospital with 2 more clots…mesenteric and splenic veins. My body had rerouted the blood through the small veins to get it to my organs. This causes problem, gastric hypertension, gastric & esophageal varices, and high ammonia levels in my blood since all of blood doesn’t filter. So, it’s a difficult situation, even to specialist and teaching hospitals.
        I am looking forward to reaching out to others and hearing their stories. I know out will be encouraging.

        • Thanks for your reply, Debbie. It is surprising to me how many people are not told clots do not always dissolve, when that is often the case. I think it does depend on where the clot is located, as you said, and if it will cause additional problems or not. I am also glad to hear you are in the Facebook Group and hope you can find some support there. Welcome! Do they know why you continue clotting? I may have missed that in the original post. I hope you have a nice holiday. Thinking of you and keep in touch. Take care!

    • Laura partridge says:

      I know this was posted some time ago but I just had to contact you and tell about my sons experience which seems quite similar to yours. He has portal hypertension. Venous thrombosis and has just been in hospital for bleeding varicies and ascites. Told he has APS and this has caused blood clots in his body. His liver function is poor and although initially it looks like clots were getting smaller he is getting worrying complications. He has blood thinners for over 6 months now
      Hope your health has improved and it would be lovely to keep in touch with you. Best wishes

  2. Judith Cannata says:

    I was also told that I have Antiphospholipid, I had the veins in my legs done and it has made me feel so much better. I had a large clot in my vagina which has now disappeared, after the surgery. I take a daily aspirin, waiting for further blood work to come back, to see if the numbers have changed. When I was younger I had several miscarriages, no one made me aware that something like this could be wrong.

  3. Sara,
    Thank you so much for sharing this. I am 36 and recovering from a jugular vein clot and clots in both lungs. I was diagnosed 3 months ago. I see the hematologist this week. I will most definitely ask to be tested for this. I also was taking birth control pills. I just can’t believe that is all that caused my issues but I sure hope so. I don’t want to take Coumadin all my life. But I don’t want to be taken off of it if I do have a clotting disorder. I just want to be normal again. I appreciate your wisdom and wish you the best.


  4. James Lamont says:

    My leg has burgundy blotchy areas on toes and ankle. I been reading about APS. I need to get tested by other then the V.A. Doctors who put me on Xarelto 20 mg for the last 8 years. I having many side affects. Was told if I get off these meds I could die. Also the cronic pain I have they put me on tromadol to manage the pain for the 8 years. Don’t know where to go.


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  4. […] to do to take care of myself. I felt like I was serving a life sentence after being diagnosed with antiphospholipid syndrome placed on blood thinners indefinitely. Not only that, didn’t particularly like learning to live […]

  5. […] a hematologist who handled my case in the hospital. He is my primary contact for managing my blood, antiphospholipid syndrome, warfarin management and anything new that may pertain to my blood or ongoing condition. For […]

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