I have Lupus

Systemic Lupus Erythematosus (Lupus)

While lupus is not well known or understood, it is far more common than better known diseases such as leukemia and multiple sclerosis. Without early diagnosis and treatment, lupus can be severely debilitating, even deadly. 

Lupus can range from mild to life-threatening and should always be treated by a doctor

Here are a few quick facts about lupus:

• Lupus is a widespread and chronic autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own tissues and organs, including joints, kidneys, heart, lungs, brain, blood, and skin.
• If left untreated, lupus is potentially fatal. Lupus can lead to organ damage and failure. Serious conditions that can arise include kidney disease, pancreatitis, pleurisy, vasculitis, pericarditis, and cancer.
• Up to 1.5 million Americans are afflicted by some form of lupus, while more than five million people are known to be affected worldwide.
• Symptoms include fever, fatigue, loss of appetite, rashes, hair loss, swollen glands, sensitivity to light, chest, muscle and joint pain, ulcers in the mouth or nose, and others.
• Typical treatments include steroids, painkillers, and immunosuppressants, as well as behavior and diet changes. In March 2011, Benlysta became the first FDA-approved lupus drug treatment in over 50 years.
• Ninety percent of those afflicted are women and 80% are between the ages of 15 and 45.
• People of color are two to three times more likely to develop lupus than Caucasians.
• Lupus is one of America’s least recognized major diseases. While lupus is widespread, awareness and accurate knowledge about it lags decades behind many other illnesses.
• Living a full life with lupus is possible, but doing so relies heavily on early diagnosis and consistent treatment.
• More than 16,000 Americans are diagnosed with lupus each year.
• Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
• There are many treatments for lupus’ symptoms, but there is no cure…

What is lupus?

Lupus is a widespread and chronic (lifelong) autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood, or skin. Lupus is one of America’s least recognized major diseases, despite the fact that upwards of 1.5 million Americans and over five million worldwide suffer with this debilitating disease. Ninety percent of those affected with lupus are women between the ages of 15 and 45, and of those, two-thirds are people of color. It is far more common than well-known diseases such as leukemia, multiple sclerosis, muscular dystrophy and cystic fibrosis combined.

Lupus causes a wide variety of devastating symptoms. It can affect nearly every organ in the body with no predictability, causing widespread infections and inflammation. As of yet, lupus has no cure but advances in the medical and research community are continually being made, which will lead to earlier diagnosis, better treatments and eventually a cure.

A healthy immune system protects the body against viruses, bacteria, and other foreign materials. With an autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissue. The immune system then makes antibodies directed against “self”. This debilitating disease affects each patient differently.

What Causes Lupus?

First of all, it is important to know that lupus is not contagious. Secondly, it is a fact that even medical professionals and researchers can not say for certain what causes lupus. Most of those in medical and research professions will agree that several factors might determine an individual’s likelihood to develop lupus.

Genetics. While a family history of lupus does not mean an individual will get lupus, it can determine a person’s likelihood for the disease.

Environment. Research is being conducted regarding environmental factors that may play a roll in being a trigger for lupus. Exposure to UV light (photo-sensitivity), smoking, stress, or toxins may or may not be contributing factors.

Hormones and Illness. Because of the fact that women in their childbearing years are the most common demographic afflicted with lupus, research is suggesting that higher levels of hormones, such as estrogen and progesterone, are linked to auto-immune diseases like lupus. People affected with viruses and bacteria, such as parvovirus, hepatitis C, or Epstein-Barr (EBV) may develop lupus, but a direct causal link has not been established.

Medications. Some medications are suspected triggers of lupus and symptom flares, thus a subset of the disease. Drug-induced lupus is based on this theory. Often, once a patient with drug-induced lupus stops taking the medications suspected of inducing the lupus, the symptoms can decline rapidly.

A Combination of Factors. Many in the medical and research fields believe that a combination of all the above listed factors is likely more susceptible to getting lupus, than a person with, perhaps, only one of the factors.

Lupus continues to remain a mystery to doctors, researchers and the general public. With continued research and education, one day we will understand better what causes this autoimmune disease to occur.

Lupus is one of those mysterious diseases that research has not quite pinned down. It won’t be until science catches up with the disease that we will truly understand what causes this autoimmune disease to occur.

Antiphospholipid Antibody Syndrome

I have Antiphospholipid Antibody Syndrome

Antiphospholipid (AN-te-fos-fo-LIP-id) antibody syndrome (APS) is an autoimmune disorder. Autoimmune disorders occur if the body's immune system makes antibodies that attack and damage tissues or cells. 

Antibodies are a type of protein. They usually help defend the body against infections. In APS, however, the body makes antibodies that mistakenly attack phospholipids—a type of fat. 

Phospholipids are found in all living cells and cell membranes, including blood cells and the lining of blood vessels.

When antibodies attack phospholipids, cells are damaged. This damage causes blood clots to form in the body's arteries and veins. (These are the vessels that carry blood to your heart and body.)

Usually, blood clotting is a normal bodily process. Blood clots help seal small cuts or breaks on blood vessel walls. This prevents you from losing too much blood. In APS, however, too much blood clotting can block blood flow and damage the body's organs.

Overview

Some people have APS antibodies, but don't ever have signs or symptoms of the disorder. Having APS antibodies doesn't mean that you have APS. To be diagnosed with APS, you must have APS antibodies and a history of health problems related to the disorder.

APS can lead to many health problems, such as stroke, heart attack, kidney damage, deep vein thrombosis (throm-BO-sis), and pulmonary embolism (PULL-mun-ary EM-bo-lizm).

• APS also can cause pregnancy-related problems, such as multiple miscarriages, a miscarriage late in pregnancy, or a premature birth due to eclampsia (ek-LAMP-se-ah). (Eclampsia, which follows preeclampsia, is a serious condition that causes seizures in pregnant women.)

Very rarely, some people who have APS develop many blood clots within weeks or months. This condition is called catastrophic antiphospholipid syndrome (CAPS).

People who have APS also are at higher risk for thrombocytopenia (THROM-bo-si-to-PE-ne-ah). This is a condition in which your blood has a lower than normal number of blood cell fragments called platelets (PLATE-lets). Antibodies destroy the platelets, or they’re used up during the clotting process. Mild to serious bleeding can occur with thrombocytopenia.

APS can be fatal. Death may occur as a result of large blood clots or blood clots in the heart, lungs, or brain.

Outlook

APS can affect people of any age. However, it's more common in women and people who have other autoimmune or rheumatic (ru-MAT-ik) disorders, such aslupus. ("Rheumatic" refers to disorders that affect the joints, bones, or muscles.)

APS has no cure, but medicines can help prevent its complications. Medicines are used to stop blood clots from forming. They also are used to keep existing clots from getting larger. Treatment for APS is long term.

If you have APS and another autoimmune disorder, it's important to control that condition as well. When the other condition is controlled, APS may cause fewer problems.

Other Names for Antiphospholipid Antibody Syndrome

• Anticardiolipin antibody syndrome, or aCL syndrome
• Antiphospholipid syndrome
• aPL syndrome
• Hughes syndrome
• Lupus anticoagulant syndrome

What Causes Antiphospholipid Antibody Syndrome?

Antiphospholipid antibody syndrome (APS) occurs if the body's immune system makes antibodies (proteins) that attack phospholipids.

Phospholipids are a type of fat found in all living cells and cell membranes, including blood cells and the lining of blood vessels. Researchers don’t know what causes the immune system to make antibodies against phospholipids.

APS causes blood clots to form in the body's arteries and veins. Usually, blood clotting is a normal bodily process. It helps seal small cuts or breaks on blood vessel walls. Clotting prevents you from losing too much blood. In APS, however, too much clotting can block blood flow and damage the body's organs.

Researchers don't know why APS antibodies cause blood clots to form. Some believe that the antibodies damage or affect the inner lining of the blood vessels, which causes clotting. Others believe that the immune system makes antibodies in response to blood clots damaging the blood vessels.

Who Is at Risk for Antiphospholipid Antibody Syndrome?

Antiphospholipid antibody syndrome (APS) can affect people of any age. The disorder is more common in women than men, but it affects both sexes.

APS also is more common in people who have other autoimmune or rheumatic disorders, such as lupus. ("Rheumatic" refers to disorders that affect the joints, bones, or muscles.)

About 10 percent of all people who have lupus also have APS. About half of all people who have APS also have another autoimmune or rheumatic disorder.

Some people have APS antibodies, but don't ever have signs or symptoms of the disorder. Having APS antibodies doesn't mean that you have APS. To be diagnosed with APS, you must have APS antibodies and a history of health problems related to the disorder.

However, people who have APS antibodies without signs or symptoms are at risk of developing APS. Health problems, other than autoimmune disorders, that can trigger blood clots include:

• Smoking
• Prolonged bed rest
• Pregnancy and the postpartum period
• Birth control pills and hormone therapy
• Cancer and kidney disease

What Are the Signs and Symptoms of Antiphospholipid Antibody Syndrome?

The signs and symptoms of antiphospholipid antibody syndrome (APS) are related to abnormal blood clotting. The outcome of a blood clot depends on its size and location.

Blood clots can form in, or travel to, the arteries or veins in the brain, heart, kidneys, lungs, and limbs. Clots can reduce or block blood flow, damaging the body's organs and possibly causing death.

Major Signs and Symptoms

Major signs and symptoms of blood clots include:

• Chest pain and shortness of breath
• Pain, redness, warmth, and swelling in the limbs
• Ongoing headaches
• Speech changes
• Upper body discomfort in the arms, back, neck, and jaw
• Nausea (feeling sick to your stomach)

Blood clots can lead to stroke, heart attack, kidney damage, deep vein thrombosis, and pulmonary embolism.

Pregnant women who have APS are at higher risk for miscarriages, stillbirths, and other pregnancy-related problems, such as preeclampsia.

Preeclampsia is high blood pressure that occurs during pregnancy. This condition may progress to eclampsia. Eclampsia is a serious condition that causes seizures in pregnant women.

Some people who have APS may develop thrombocytopenia. This is a condition in which your blood has a lower than normal number of blood cell fragments called platelets.

Mild to serious bleeding causes the major signs and symptoms of thrombocytopenia. Bleeding can occur inside the body (internal bleeding) or underneath the skin or from the surface of the skin (external bleeding).

Other Signs and Symptoms

Other signs and symptoms of APS include chronic (ongoing) headaches, memory loss, and heart valve problems. Some people who have APS also get a lacy-looking red rash on their wrists and knees.

Living With Antiphospholipid Antibody Syndrome

Antiphospholipid antibody syndrome (APS) has no cure. However, you can take steps to control the disorder and prevent complications.

Take all medicines as your doctor prescribes and get ongoing medical care. Talk with your doctor about healthy lifestyle changes and any concerns you have.

Medicines

You may need to take anticoagulants, or "blood thinners," to prevent blood clots or to keep them from getting larger. You should take these medicines exactly as your doctor prescribes.

Tell your doctor about all other medicines you're taking, including over-the-counter or herbal medicines. Some medicines, including over-the-counter ibuprofen or aspirin, can thin your blood. Your doctor may not want you to take two medicines that thin your blood because of the risk of bleeding.

Women who have APS shouldn't use birth control or hormone therapy that contains estrogen. Estrogen increases the risk of blood clots. Talk with your doctor about other options.

Ongoing Medical Care

If you have APS, getting regular medical checkups is important. Have blood testsdone as your doctor directs. These tests help track how well your blood is clotting.

The medicines used to treat APS increase the risk of bleeding. Bleeding might occur inside your body (internal bleeding) or underneath the skin or from the surface of the skin (external bleeding). Know the warning signs of bleeding, so you can get help right away. They include:

• Unexplained bleeding from the gums and nose
• Increased menstrual flow
• Bright red vomit or vomit that looks like coffee grounds
• Bright red blood in your stools or black, tarry stools
• Pain in your abdomen or severe pain in your head
• Sudden changes in vision
• Sudden loss of movement in your limbs
• Memory loss or confusion

A lot of bleeding after a fall or injury or easy bruising or bleeding also might mean that your blood is too thin. Ask your doctor about these warning signs and when to seek emergency care.