Lupus Foundation of Mid and Northern New York, Inc.

Lupus Foundation of Mid and Northern New York

About Lupus

Lupus Erythematosus is an extremely complex, difficult to diagnose, life altering, and potentially fatal disease. It is an autoimmune disease in which a triggering agent causes the immune system to actually attack the patient’s own tissue causing inflammation in the skin, joints, blood, heart, lungs, brain, and kidneys. 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 1.5 to 2 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. While approximately eight of ten new cases of lupus develop among women of childbearing age, men, women, and children also develop the disease. It ranges from mild to life threatening and is a leading cause of kidney disease, stroke, and premature cardiovascular disease in young women and 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 can become very ill before a diagnosis is reached. Lupus suffers from the 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 with symptoms varying from one person to the next, therefore 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 has not been a drug developed and approved by the U.S. Food and Drug Administration (FDA) for lupus in almost 40 years. There are only 3 drugs currently approved for lupus so the majority of treatments are considered off-label. 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 their future. For too long, those affected by lupus have been disappointed with the lack of progress being made to discover the cause, improved treatments, and cure for lupus.

The prognosis for lupus patients can become more promising. Better diagnostic techniques and evaluation methods combined with a conservative use of medications will give physicians the tools to more effectively manage disease symptoms and complications. Many lupus patients and their loved ones are also beginning to take a more active role in their own health care by participating in lupus education programs and developing strong coping and self-management skills. Elevating the public’s awareness of lupus also increases the number of patients who seek medical attention and leads to earlier diagnosis and treatment, and a more positive prognosis. Lupus patients who empower themselves by developing a strong knowledge of their disease as well as a reliable support system increase their chances for a better disease outcome and enhanced quality of life.

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