Lupus, or Systemic Lupus Erythmetosus (SLE) is an autoimmune disease which causes inflammation in various parts of the body. It is not known what causes Lupus, except that it appears to have a genetic component. The name was derived from a symptom; the malar rash, often called "butterfly rash" across the face of many SLE patients that resembles the markings on the face of a wolf. Major organ involvement, including kidneys, gastrointestinal system, lungs, heart, brain and even the CNS can be effected, hence the term "systemic." Pleurisy, costochondritis (chest wall inflammation and pain), migraines, degenerative joint disease and "brain fog" are common. Lupus arthritis, Raynauds, Sjogrens Syndromes, Multiple Sclerosis and Rheumatoid arthritis and Fibromyalgia (FMS) are just some of the disorders/syndromes that often accompany the lupus diagnosis.

With lupus the immune system loses its ability to tell the difference between foreign substances and its own healthy cells and tissues. The confused immune system makes antibodies directed against the "self," attacking as if they were foreign invaders such as a virus or bacteria. This causes inflammation and injury to tissues, and subsequently varying degrees of chronic pain. Symptoms can range from relatively mild with frequent remissions, to quite severe and life threatening. Some patients can continue to work, while others are too debilitated by pain, fatigue and frequent hospitalizations due to shifting systemic illnesses.

There is no cure for Lupus at present, and although treatment is available, advances in treatment over the last thirty years has been minimal. This despite the fact that more people have Lupus than AIDS, Cerebral Palsy, Multiple sclerosis, sickle-cell anemia and cystic fibrosis combined! Paradoxically, the general population is less likely to be familiar with Lupus than AIDS or any of the other illnesses mentioned above.

My Story

I had a career as a therapist, licensed as an LMFT in Oklahoma. I raised a delightful daughter as a single parent. But I was frequently ill, with vague flu-like symptoms. In 1990 I began to experience joint pain that was diagnosed initially as arthritis. I developed carpel tunnel symptoms despite no history of repetitive movement tasks. Finally, I was diagnosed with FMS.

By 1994 my symptoms had subsided. I moved to Santa Monica had taken time off from my practice as a therapist. Then in Jan 1996 I had what would be the first of two car accidents that caused enough trauma to my system to precipitate the onset of my worst lupus flare in late 1996.

It is only in retrospect that my current Rheumatologist and I recognize that I had "flared" previously. In addition to the flare from 1990-1994, I met the profile from an early age, plagued by allergies as a child, respiratory illnesses as an adult, frequent yeast and urinary infections, migraines, bouts of pleurisy, fluctuating temperatures- elevated or low -- and generalized pain and fatigue.

I have been diagnosed with not only Lupus, but also severe FMS, Raynauds Syndrome, Sjogrens Syndrome, Lupus inflammation in my brain, or CNS Lupus and degenerative joint disease.

The medications used to treat lupus can cause yet more problems. There is yet to be discovered a drug or treatment that does not bring with it the risk of further undesirable symptoms.

Part II.

References:
The Lupus Book: A guide for patients and their families Dr. Daniel Wallace Chief, Rheumatology, Cedar Sinai Medical Center Los Angeles, CA

Lupus Resources

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Kathie Turner, MA, LMFT was a psychotherapist working in both youth service agencies and in Private Practice until March 1995. Since being diagnosed with Lupus and Fibromyalgia, she has participated in support groups through online mailing lists and conducted her own research on SLE and FMS. Currently she is the owner of Health Care Provider Services, a home business providing administrative and marketing support services to health care professionals; primarily psychotherapists.