Support for the Lupus Patient

Lupus is a chronic autoimmune disorder with inflammation of the connective tissue. For unknown reasons the body will attack its own connective tissue as if it were a foreign body. It is estimated that over 1.5 million people suffer from this disease; of which 90% are women and 80% of these women are 15-45 years of age. People of color are three times more likely to be stricken with lupus than white people; this cause is unknown. However, some believe that it is due to heredity, hormones, or viral infections.

There are two types of lupus. The most common form is where it will affect the exposed areas of skin. The less common form, but more serious, is where it will affect the internal systems. Symptoms include a butterfly rash on face (30% will have this symptom, a tell-tale sign), nausea, fatigue, flu-like symptoms, hair loss, fever, joint pain and loss of appetite. It may result in anemia, arthritis or neuro/psychiatric problems. Stress, excessive sunlight and some drug allergies have been known to exacerbate the symptoms.

Lupus is diagnosed by a skin biopsy or by a blood test. Both tests will check for antibodies. Four out of ten patients will be treated by 3 or more doctors and have 6 or more medications prescribed. It is a mysterious and debilitating illness that affects the total well being of its patients.

Common used treatments for lupus are NSAIDS (non-steroidal anti-inflammatory drugs), anti-malarials (disease modifying agents), steroids and immunosuppressives. However, sometimes the best treatment is someone to share your ups and downs with.

A survey in March 1998 by Tom Ferguson M.D. at Boston’s Center for Clinical Computing and William Kelly at the Sapient Health Network showed that online health communities are significantly more helpful than even specialists in 9 of 12 healthcare aspects. The nine areas that were found to be superior were the convenience, cost effectiveness, emotional support, compassion, source of medical references, source of information, source of coping tips, death issues, and most likely to be there for the long haul. They also rated a bit higher in the area of technical medical information. Online health communities therefore seem to be a very good bet for anyone with a chronic illness. It is also a means of finding a place to go where you are both understood and appreciated. Many find that it gives them a new purpose in life; a sense of accomplishment when they help comfort someone new to their illness.

Support can be found in these helpful organizations and groups:

Lupus Foundation of America, Inc.
2000 L Street, NW Suite 710
Washington, DC 20036
202-349-1155, brochure request: 800-558-0121

Group Listings at Yahoo:

Butterflynewsbytes-subscribe@yahoogroups.com
1847 Members, Archives: Public
Butterfly NewsBytes – Lupus News, with Shar Phoenix. Butterfly NewsBytes (Formerly Butterfly News)

Bydls-subscribe@yahoogroups.com
1205 Members, Archives: Membership required
The bi-monthly newsletter for the www.Butyoudontlooksick.com. website.

LUPIES-subscribe@yahoogroups.com
675 Members, Archives: Membership required
Where those who have Lupus, family and friends, or those waiting for a diagnosis of lupus, can find others for support and friendship!

Life_With_Lupus-subscribe@yahoogroups.com
321 Members, Archives: Membership required
Everyone with lupus knows is hard to find the support you need, to get day by day, that special word off encouragement, or just an answer to a question.

Lupus-subscribe@yahoogroups.com
320 Members, Archives: Membership required
Issues revolving around Lupus and everything that comes along with it. This list is geared towards those afflicted with the disease, as well as their friends and family.