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Antiphospholipid Antibody Syndrome
Wednesday, 16 July 2003
Tuesday, 23 November 2004
Lupus Anticoagulant, Hughes Syndrome, Anticardiolipin Antibody Syndrome

What

The presence of antiphospholipid antibodies in the general population of the United States is 1-5%. Not everyone who has antibodies has the syndrome. There must also be a problem with excessive blood clotting. Seventy percent of people with systemic lupus erythematosus (SLE) will eventually have antiphospholipid antibodies. Since SLE is more common among women, the percentage of those with antiphospholipid antibody syndrome who are female is 60-80%. However, males and females before puberty appear to be affected equally. People of all ages and races are affected, but individuals of African ancestry are more likely to have antiphospholipid antibodies than those of European ancestry.

Who

The presence of antiphospholipid antibodies in the general population of the United States is 1-5%. Not everyone who has antibodies has the syndrome. There must also be a problem with excessive blood clotting. Seventy percent of people with systemic lupus erythematosus (SLE) will eventually have antiphospholipid antibodies. Since SLE is more common among women, the percentage of those with antiphospholipid antibody syndrome who are female is 60-80%. However, males and females before puberty appear to be affected equally. People of all ages and races are affected, but individuals of African ancestry are more likely to have antiphospholipid antibodies than those of European ancestry.

Signs and Symptoms

Individuals with Antiphospholipid Antibody Syndrome often experience the following symptoms:

  1. Recurrent venous or arterial blood clots. The most common site are clots in the veins of the legs leading to swelling and a risk of the clot traveling to the lung. Many different locations of clotting are possible leading to potential problems of strokes, heart attacks and eventually, liver and kidney damage.
  2. Multiple miscarriages in women trying to bear children.
  3. Catastrophic antiphospholipid syndrome. This is unusual, but can be very severe, with multiple clots in many locations at the same time.
  4. Low platelet count.
  5. Anemia.
  6. Rash.

Possible Causes

It is not known exactly how the antibodies cause the clotting, though there are several theories. Antibodies appear to predispose someone to forming a clot when triggered by damage to a blood vessel, which is why it is important to limit the factors that predispose to clotting in people with this syndrome.

Diagnosis

For the diagnosis of Antiphospholipid Antibody Syndrome, a person must have both a clinical event such as a clot or a miscarriage as well as antiphospholipid antibodies. The presence of antiphospholipid antibodies can be shown on a variety of different laboratory tests.

Treatment

For those who only have antibodies, there is controversy about whether aspirin helps to prevent the ultimate development of clots. For people who have had clots and have antibodies, however, preventing any further clots using warfarin (a blood thinner) is recommended. This is usually necessary for the rest of the person’s life.

Prognosis

The prognosis for an individual with Antiphospholipid Antibody Syndrome is varied. Many people will have few problems, some will have many. Appropriate treatment if someone has had a clot can prevent the majority of the complications, which include further clots, strokes, heart attacks, miscarriages and multi-infarct dementia (a kind of Alzheimer’s like disease.)

Connect with other parents

In the spirit of community and support, Madisons Foundation offers the unique service of connecting parents of children with rare diseases. If you would like to be connected to other parents of children with this disease, please fill out this brief form.

Weblinks

E-Medicine
A website with detailed and somewhat technical information about the disease.

American Autoimmune Related Disease Associations
A nice, easy to read review of the disease process. You have to request more detailed information which will be sent to you. You do need to pay shipping charges.

The Lupus Foundation of America
A detailed website with information, support links and ongoing researach on antiphospholipid antibody syndrome as well as other Lupus related diseases.

Google Search for Antiphospholipid Antibody Syndrome

References and Sources

www.ohsu.edu/som-hemonc/handouts/deloughery/apla.shtml www.emedicine.com/ped/topic118.htm home.mdconsult.com/das/book/29420892/view/917/589.html/top