APS Awareness Day

I know that this is not about tatting but as a SLE (Lupus) patient and now possible APS patient I think is good to raise awareness about these almost unknown diseases that don't have a cure.

What is Antiphospholipid Antibody Syndrome (APS)? APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

APS 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. There are two known forms of APS. APS may occur in people with systemic lupus erythematosus, other autoimmune disease, or in otherwise healthy individuals. Sadly, when most people hear about APS and it being referred to as autoimmune disease, they incorrectly confuse the terms autoimmune with acquired immune deficiency syndrome (AIDS); or they think this is a form of cancer.

Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women. For example, it has been estimated by some doctors that one third of all of young strokes (defined as under the age of 50) are due to APS.

In obstetrics it is estimated by some doctors that up to 25% of all women with 2 or more spontaneous miscarriages have APS. Some doctors believe that 1 in 5 of all Deep Vein Thrombosis (DVT), Pulmonary Embolism (PE), and even worse, amputations are due to APS. And it is believed that 40-50% of patients with Lupus also have APS. Still, with these statistics, APS rarely is discussed as a women’s health issue and is misdiagnosed often. Therefore the total number of people affected and true statistics are unknown really.

APS is also referred to as APLS or APLA in the United States and Hughes Syndrome or Sticky Blood in the UK.