What is Lupus?

Lupus Erythematosus is a chronic inflammatory disease that destroys body tissue and organs. It affects mostly young women during their childbearing years and 1 out of every 185 Americans. Lupus is an autoimmune disease in which a triggering agent causes the immune system to actually attack the patient’s own tissue. It can cause severe joint and muscle pain, extreme exhaustion, fevers, skin rashes, hair loss, and anemia and can attack vital organs. It is more common than AIDS, sickle-cell anemia,cerebral palsy, multiple sclerosis, and cystic fibrosis and it is estimated that there are close to two million Americans with Lupus. It disproportionately affects people of color, especially African Americans, Asians, Hispanics, and Native Americans, and like most autoimmune diseases is more prevalent in females. It ranges from mild to life threatening and is a leading cause of kidney disease, stroke and premature cardiovascular disease in young women. There is no known cause or cure.

Most lupus patients have suffered an average of four years prior to being diagnosed because there is no single test that identifies lupus. A diagnosis is usually made through a process of observation and elimination. Many patients become very ill before a diagnosis is reached. Lupus suffers from lack of awareness more than any other major disease. It affects females over 90% of the time, and the majority of those it strikes do not look ill. Lupus is a heterogeneous disease so most treatments must be individualized to each patient.

Existing treatments for lupus are not adequate. Some are toxic and cause detrimental side effects with long-term use. There are only four drugs currently approved for lupus so the majority of treatments are considered off-label. Finally, after 56 years of waiting, a drug was specifically developed and approved for treating lupus. Since it is a complicated multi-system disease, lupus patients must regularly see several different specialists making it an expensive chronic illness.

It is estimated that one in four persons with lupus is disabled and one in five receives their medical care through Medicare or Medicaid. Lupus and other autoimmune diseases are the fourth leading cause of disability among women. The economic burden to society is staggering between the costs of disability income payments, government-sponsored medical care and lost tax revenue.

Lupus is the prototypical autoimmune disease as it can affect virtually any part of the body. Since there are over 100 other autoimmune and related disorders, the benefits of lupus research could be far reaching. Yet present funding for lupus research is insufficient. Lupus strikes young people in the prime of their lives and drastically impacts their dreams and futures.

The Lupus Agencies of New York State (LANYS) are dedicated to improving the quality of life for lupus patients and their loved ones by providing education, support, and outreach services, and promoting programs of awareness, advocacy, and research. We understand the isolation and fear lupus patients often feel when they are first diagnosed. We also recognize the impact the disease can have on other family members. Our education and support programs are designed to empower patients to actively participate in their own health care to hopefully improve disease outcome and enhance their quality of life.

We are also committed to increasing community awareness and program revenues by focusing public attention on lupus. We realize that early diagnosis and treatment are vital components in reducing the physical and economic impact of the disease. The Lupus Agencies of New York State strongly support increased research funding that will enable scientists to identify the cause; develop faster diagnostic measures and safe, more effective treatments; and ultimately,discover the cure to eradicate this devastating disease.