Help Me Celebrate World Lupus Day

As most of you know I have Lupus. It is a disease that needs more attention brought to it. We need to make people more aware of how serious it can be. Most people that find out I have Lupus, the first thing they usually say is "You don't look sick." No besides weight gain, I probably don't look sick but my insides are a different story. I thought I would share a few facts about Lupus. It is a strangle fickle disease and affects us all differently. I have a severe case where as others in my support group have a mild case and continue to function normally on a day to day basis. My days are determined by Lupus....I like to fight back though. :)

What is Lupus?

Lupus is scary; it can be life threatening, life changing and incurable. But it is also treatable, survivable and, most importantly, many aspects of the disease can be managed by you - the patient. The first step is to understand what is happening within and to your body.

Lupus Erythematosus is a chronic disorder of the immune system that causes inflammation of various parts of the body. For most people, lupus is mild, affecting only a few body organs: for others, it may cause serious and life threatening problems. The body’s immune system normally makes proteins called antibodies to protect the body against viruses, bacteria and other foreign materials. These foreign materials are called antigens. In an immune disorder such as lupus, the immune system loses the ability to tell the difference between foreign substances (antigens) and its own cells and tissues. The immune system then makes antibodies directed against “self”. These antibodies called auto-antibodies, react with the “self” antigen to form immune complexes. The immune complexes build up in the tissues and can cause inflammation, injury to tissues and pain.

Different Types of Lupus

Discoid Lupus (also Cutaneous Lupus) is confined to the skin. It is characterized by persistent flushing of the cheeks or disk-like lesions (i.e. rash) that appear on the face, neck, scalp and other areas exposed to ultraviolet light (sunlight, fluorescent light). The rash is usually raised, scaly red but not itchy. These lesions, if not adequately treated, may develop into permanent scars. If they involve the scalp, they can result in bald spots.

Systemic Lupus Erythematosus (SLE) is usually more severe than discoid lupus and can affect almost any organ in the body. In some individuals, this may mean skin and joint involvement, while in others the lungs, heart, kidneys and blood may be affected. The disease is characterized by periods in which few if any symptoms are evident (remission) and other periods in which it becomes active again (flare). Periods of improvement may last weeks, months, or even years. The disease tends to remit over time. Some patients never develop severe complications, and the outlook is improving for those patients who do develop severe manifestations.

Drug-Induced Lupus is the result of certain prescribed drugs. These medications can create a lupus-like syndrome which is similar to SLE, but very rarely affects either the kidneys or the nervous system. The most commonly implicated drugs, are hydralazine (used to treat hypertension) and procainamide (used to treat irregular heart rhythms). Drug-induced lupus is more common in men than women because they are treated with these drugs more often than women. However, only about four percent of the individuals who take these drugs will develop the antibodies of lupus and an even smaller percentage will actually develop drug-induced lupus. When the medication is stopped, lupus symptoms usually fade. To read about what drugs commonly are thought to cause Drug Induced Lupus click here.

Neonatal Lupus is a rare autoimmune disorder that is present at birth and affects infants of women who have lupus and/or Anti-Ro/SSA Antibodies. Affected infants often develop a red rash, may develop liver problems and low blood platelets. Some infants also develop a heart condition known as congenital heart block. The symptoms associated with neonatal lupus, with the exception of congenital heart block, usually resolve themselves within the first several months of life. 

Who Gets Lupus?

There are 1.5 to 2 million people in the United States who suffer from systemic lupus. More people have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined. Young women are most frequently affected, out-numbering male patients ten to one. The onset of lupus occurs most often in persons 20-40 years of age, but can occur at any time.

African Americans and Hispanics have a higher frequency of this disease than do Caucasians. SLE also appears in the first-degree relatives of lupus patients more often than it does in the general population, which indicates a strong hereditary component. However, most cases of SLE occur sporadically, indicating that both genetic and environmental factors play a role in the development of the disease.

Source: Larry Silverman, M.D. F.A.C.P., F.A.C.R. and National Institute of Health

A Few Facts About Lupus

You may need special kinds of doctors to treat the many symptoms of lupus. Your health care team may include:

• A family doctor
• Rheumatologists—doctors who treat arthritis and other diseases that cause swelling in the joints
• Clinical immunologists—doctors who treat immune system disorders
• Nephrologists—doctors who treat kidney disease
• Hematologists—doctors who treat blood disorders
• Dermatologists—doctors who treat skin diseases
• Neurologists—doctors who treat problems with the nervous system
• Cardiologists—doctors who treat heart and blood vessel problems
• Endocrinologists—doctors who treat problems related to the glands and hormones
• Nurses
• Psychologists
• Social workers
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