Living - I'm Living With Lupus

LUPUS: The Disease with a Thousand Faces

In the past, when medicine was concerned primarily with acute diseases which were an immediate threat to life, disease was the concern primarily of the physician whose goal it was to intervene and preserve quantity of life. As these acute illnesses were better controlled, and more and more of the diseases afflicting humankind were of the chronic variety, medicine had to become concerned not only with the quantity of life, but equally as much with the quality of life. In this new reality, disease fell into the domain of a team comprising physicians, paramedical care providers, and patients. Today, many of the disease states presenting to the physician such as atherosclerotic disease, diabetes, malignancies, arthritis, and the connective tissue diseases will affect the patient over many years. The physician will have to work with the patient, and all associated community health care providers, to assure a stable, healthy state and good quality of life in general.

All of the personnel involved in administering health care such as the physician, nurse, therapist, pharmacist, have had training in understanding disease and its impact on a person. The patient who, in fact, is the pivotal influence in this new team has had very little in the way of formal medical education and is frequently left to fend for himself in acquiring necessary information. How is it then possible to ask the patient to participate in this team approach to their illness if they have not had adequate background?

Patients were first to recognize this deficiency and, in large measure, this led to the formation of grass root organizations of patients with specific diseases, banding together to educate themselves and the public. The lupus organizations were really among the first of such patient groups and these groups have formed the models for other disease groups which have begun to organize. Physicians soon thereafter recognized the usefulness of these organizations as a vehicle for educating patients and making them therefore, more qualified members of the new medical team involved in the care of patients with lupus and they participated actively in both the administrative and educational functions of these organizations. This booklet exemplifies the new partnership. Here doctor, patient, and lupus organization have banded together to create an educational vehicle for patients and their families, so that patients will be better equipped to be participants in the future health planning for their specific disease. I commend Lupus Canada and Dr. Senécal for their foresight, their interest, and their contribution. On behalf of all lupus patients, I wish to extend to them our thanks for producing this very important work.

Dr. M.B. Urowitz
Director, Lupus Clinic, The Wellesley Hospital,
and Lupus Databank Project, Toronto
Medical Advisor, Ontario Lupus Association