Lupus – The Disease -Backgrounder 

BASIC FACT ABOUT LUPUS

Lupus Is Wide-Spread, Devastating And Highly Discriminatory

Lupus is an acute and chronic, inflammatory disease that, for unknown reasons, causes the immune system to become hyperactive and attack the body’s own healthy tissue and organs.  The disease is hard to diagnose, difficult to live with, incurable, and can be life threatening.  Lupus is NOT infectious, rare or cancerous.

At least 1.4 million Americans have been told by a doctor they have lupus, ninety percent of whom are women.  Lupus affects more Americans than AIDS, multiple sclerosis, cystic fibrosis, sickle-cell anemia and cerebral palsy combined. Despite its prevalence, too few people know about lupus and its potentially life-threatening health effects.

The cause(s) of lupus is unknown, but environmental and genetic factors are involved.  While scientists believe there is a genetic predisposition to the disease, it is known that environmental factors also play a critical role in triggering lupus.  Some of the environmental factors that may trigger the disease are:  infections, ultraviolet light, extreme stress and certain drugs and chemicals.

Lupus can be difficult to diagnose because symptoms mimic other diseases.  Symptoms are sometimes vague and may come and go.  Symptoms include achy or swollen joints, low grade fevers, extreme fatigue and skin rashes.  At present there is no cure for lupus.  However, with early diagnosis and current methods of therapy, 80-90% of lupus patients can look forward to a normal lifespan.

Lupus can occur at any age, and in either sex, although it occurs 8 or 9 times more frequently among adult females than among adult males.  The symptoms of the disease are the same in men and women.  Hormonal factors may explain why lupus occurs more frequently in females than in males. Latinas, African Americans, Native Americans, and Asians are thought to develop lupus more frequently than Caucasians.

COMMON SYMPTOMS OF LUPUS

Lupus Can Affect Many Parts Of The Body

Most people with lupus do not experience all of these symptoms at any one time.  Symptoms of lupus mimic other illnesses, are sometimes vague, and may go into periods of remission.  Diagnosis is usually made by a careful review of a person’s entire medical history, coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.  This list of symptoms only serves to alert people to clues that might indicate the presence of lupus in an undiagnosed person.

1. Achy or swollen joints.
2. Persistent fever over 100 degrees.
3. Prolonged, extreme fatigue
4. Skin rashes, including a butterfly shaped rash across the cheeks and nose.
5. Pain in the chest on deep breathing.
6. Anemia.
7. Excessive protein in the urine.
8. Sensitivity to sunlight.
9. Hair loss.
10. Fingers turning white and/or blue in the cold.
11. Seizures.
12. Nose or mouth ulcers for more than two weeks.

TREATMENTS AVAILABLE FOR LUPUS

Some Have Serious Side Effects From Prolonged Usage

There are a number of medications commonly prescribed for the treatment of lupus.   Treatments vary depending on the specific needs and symptoms of each person.   Aspirin is often prescribed as a pain killer and an anti-inflammatory drug.  It is usually recommended for muscle and joint pain, and arthritis.  Another group of drugs commonly prescribed is non steroidal anti-inflammatory drugs.  These drugs act in the same way as aspirin.  However, they tend to be less irritating to the stomach and fewer pills per day need to be taken.

Years ago, drugs used for the treatment of malaria were found to benefit many people with lupus and are now prescribed for skin and joint symptoms.  These drugs are unique in that they often take months before demonstrating a beneficial effect.  Also, their side effects can linger for weeks after discontinuance.

Corticosteroids are potent anti-inflammatory drugs normally produced in small quantities by the adrenal gland.  The most commonly prescribed drug of this type is prednisone.  These drugs will reduce inflammation and are used to treat inflammation of the major organs, such as the kidney, lungs, nervous system and blood.  Because steroids have a variety of side effects, the dose has to be regulated to minimize the negative side effects.  Side effects from long-term use include weight gain, acne, easy bruising, osteoporosis, high blood pressure, cataracts, onset of diabetes, increased risk of infection and stomach ulcers.

For patients with more serious manifestations of lupus, in whom treatment with corticosteroids has failed, immunosuppressive drugs are prescribed.  These drugs act in a similar manner to corticosteroid drugs, in that they suppress inflammation and tend to suppress the immune system.  Their use is often associated with side effects, including anemia, low white blood cell count, and increased risk of infection.  Their use may also predispose an individual to developing cancer.

FREE LUPUS INFORMATION AVAILABLE

Library Articles Describe Symptoms, Health Effects, & Treatments

The Lupus Foundation of Northern California (LFNC), formerly known as the Bay Area Lupus Foundation, was founded in 1978 in San Jose. 

The mission of the LFNC is to be a premier source of information on lupus by providing programs and services designed to educate and increase the knowledge of those affected by lupus, promote lupus awareness, and support external lupus research efforts.

The LFNC has developed a wealth of accurate, up-to-date medical information about lupus geared for lupus patients, family members and health professionals. A 17 member Medical Advisory reviews all medical literature prior to publication or distribution.

An extensive website can be reached at www.balf.org.  It features medical information about lupus, treatment methods, and current clinical research trials; also featured is an online medical library, promotion of upcoming events and programs, and links to other lupus resources and organizations.

The LFNC publishes a professional quality 16-page quarterly newsletter. All who request it will receive two complimentary copies.  Each issue features new medical articles often written by California practicing physicians.

The LFNC has developed a comprehensive library of medical articles that encompasses more than 800 individual articles.  The listing is catalogued for easy reference and ordering. Call and request the Library of Medical Article Listing offered for free.  The website has 90 medical articles available online.

Also available is a video lending library, a privilege for LFNC members. All major conferences have been professionally videotaped. 

In 2003, the Foundation produced a 30-minute educational video entitled “Understanding Lupus” used in conjunction with our patient education program presented in English. 

Introduced in 2001 were three new videos.  These videos are entitled “Lupus: Find It Early,” “Lupus in the Workplace” and “Living with Lupus.”  “Lupus Find It Early” is also available in Spanish and was selected as a finalist in the International Medical Film competition for a Freddie Award sponsored by Times Inc.Health. 

In 2003, the LFNC introduced program materials including a 265-page manual for youth group facilitators and a 90-minute training video. Also published in 2003 were two New You magazines, in English and in Spanish.

Conferences are sponsored twice annually. Some conferences feature 5-7 physician speakers and offer credit for health professionals. The LFNC has co-sponsored a major conference with two departments of Stanford on fourteen occasions. 

Last year alone, more than 22,000 individuals requested and received our services.

The Lupus Foundation has established 28 sub-chapters and support groups located throughout central and northern California.  You may contact the LFNC weekdays at (408) 954-8600 or toll-free at 1-800-523-3363. Spanish-speaking callers may receive assistance by calling the LFNC weekday afternoons from 1-5 p.m. For further information, visit the website, www.balf.org.

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Bibliography:

LFNC Listing, Library of  750+ Medial Articles, available upon request
*The Lupus Book, by Daniel Wallace, MD, 1996
*Lupus: Everything You Need to Know, by Robert Lahita, MD, and Robert Phillips, Ph.D., 1997

*Books available for purchase through the LFNC office library