Lupus, the potentially debilitating disease, is found mostly among women of non-European descent.
As many as one and a half to two million people are afflicted with lupus in the US, it has been estimated.
That means that there are more people suffering with lupus than with AIDS, sickle-cell anemia, cerebral palsy, cystic fibrosis and multiple sclerosis combined.
Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease. It attacks the body's cells and tissue, resulting in inflammation and tissue damage.
The term "autoimmune disease" refers to a varied group of more than 80 serious, chronic illnesses that involve almost every human organ system. It includes diseases of the nervous, gastrointestinal, and endocrine systems as well as skin and other connective tissues, eyes blood, and blood vessel. In all of these diseases, the underlying problem is similar--the body's immune system becomes misdirected, attacking the very organs it was designed to protect. For reasons we do not understand, about 75 percent of autoimmune diseases occur in women, most frequently during the childbearing years.
The course of lupus is unpredictable, with periods of illness (called flares) alternating with remission.
Lupus is treatable symptomatically, mainly with corticosteroids and immunosuppressants. Corticosteroids (cortisone-like medicines) are used to provide relief for inflamed areas of the body. They lessen swelling, redness, itching, and allergic reactions.
Immunosuppressive drugs or immunosuppressants are drugs to inhibit or prevent activity of the immune system that has gone haywire.
But then there is no cure available for lupus and other autoimmune diseases.
As it happens even among the minorities, it is the middle-aged black women who have the highest death rate from lupus than any other group and these statistics continue to get worse.
It is in such circumstances some groups in the US are trying to help educate these minority women, though anyone is welcome to join their sessions, to teach them how to live better, and longer. These groups are hoping to offer courses; free if need be, to make a difference in the lives of people who are not able to understand what is happening to them once they have been diagnosed with lupus.
These classes are set up to enable lupus patients to learn how to care for themselves. They will be taught to understand their treatment options. They will learn the different drugs available to them and the benefits and side effects of each.
They will also learn how to deal with the flare-ups that can happen and when to go to see their health care providers.
They'll learn how to eat better which has proven to help lupus sufferers. These women will also learn how to get the right medical treatment. Armed with a little knowledge a person is more likely to get better care.
They will also learn relaxation techniques and how to better manage the pain they will have. These kinds of courses increase the survival rate of the patients.
Some of the most common symptoms of lupus include painful or swollen joints, unusual hair loss, unexplained fever, and extreme fatigue. A characteristic red skin rash may appear across the nose and cheeks. Rashes may also occur on the face and ears, upper arms, shoulders, chest, and hands. Because many people with lupus are sensitive to sunlight (called photosensitivity), skin rashes often first develop or worsen after sun exposure.
One woman's story began when she was only fifteen. No one could understand why she got tired so easily, her hair fell out and she developed rashes. There were signs but no one knew how to interpret them. It took them twenty years to figure out what was wrong with her.
During this time she lost thirty percent of her kidney function. She spent the next ten years being given the wrong medications. Now, she is on the right lupus drugs and doing well.
The facts are that between 1960 and 2000 the survival rates for those suffering from lupus increased incredibly. In 1960 the five year rate after being diagnosed was only five percent. Now, it is ninety percent.
The ten year rate is over eighty percent. That is a tremendous difference, but minority women still do not do as well because of the inferior medical care that they get.
It is this problem that activists seek to get over through sustained community effort.