WHAT IS LUPUS?
Lupus is not cancer. It is not related to AIDS, and it is impossible to contract from another person. Lupus is an autoimmune disease. A healthy body’s immune system fights foreign substances, such as germs and viruses. However, in the person with lupus, the immune system cannot distinguish between foreign substances and its own cells and tissues. The body reacts as if it is allergic to itself.
The Lupus Foundation of America (L.F.A.) estimates that two million Americans have a form of this disease. In the United States, lupus is more common in African Americans, Latinos, Asians, and Native Americans than in Caucasians. Studies suggest that 16,000+ Americans develop lupus yearly.
There are three main types of lupus:
Systemic lupus erythematosus (S.L.E.) is the most common form. Systemic implies that one or more organs may be involved. Symptoms extend from marginal to life-threatening.
Discoid lupus erythematosus affects the skin. A red butterfly rash may appear across the nose, cheeks, or elsewhere.
Drug-induced lupus is triggered by medicine. Symptoms are generally mild, and usually disappear when the medication is stopped. This type of lupus is most common in men.
The major symptom of lupus is inflammation. This can be characterized by pain, heat, redness, swelling and involvement of the skin, joints, heart, lungs, blood, kidneys and brain. Every lupus sufferer reacts differently to the illness. Some people experience fatigue, low-grade fever or swollen glands.
This chronic illness is difficult to identify, and frequently mistaken for other diseases. It is called The Wolf because symptoms may mysteriously appear one day and vanish the next. Besides the indicators mentioned in the previous paragraph, this elusive affliction also makes its presence known via chest pain, hair loss, numbness in fingers or toes from cold or stress, sun sensitivity, low blood count, depression, inability to concentrate and memory problems. Other warning signs include mouth sores, seizures, hallucinations, repeated miscarriages and unexplained kidney problems.
No one knows what causes lupus, and anyone may get it. Sometimes it runs in families, implying it may be hereditary. More women than men are predisposed to lupus, suggesting it may be hormone-related. If you think you have it, explain your symptoms to a doctor. He will perform a complete physical examination and do laboratory testing of blood and urine. No single test can show that you have lupus.
If you learn that you do suffer from this illness, it is important to follow up with your health care team on a regular basis, even when the disease is quiet, and all seems well. There is no cure, but in most cases, lupus can be managed. For many, it is a mild disease affecting only a few organs. For others, it may cause serious, even life-threatening, problems. However, most people can expect to live a normal lifespan.
Dealing with a chronic illness may present a real trial to you. Because you look healthy, your family, friends, and coworkers may forget that you are really sick. Whether yours is a mild or severe case, lupus is certainly a life-altering illness. The majority of people who suffer with it have limited energy. For some, depression may be a consequence. It can be discouraging to lack the stamina to play with your children, maintain a job, enjoy your home and perform some activities.
There will be times when you will not want to do much. Lupus fatigue is not the regular tiredness that normal individuals have, but an overwhelming exhaustion that often keeps one from performing even minor physical activities. Learn to manage your good days wisely by balancing proper rest, moderate exercise, and good nutrition. Keep in close contact with your doctor, and dialogue with him/her during office visits. It helps to write out your questions and concerns on paper before your appointment so you can clearly communicate them. Listen to your body and learn to pace yourself. Reduce stress in your life as much as possible. Set priorities, and stop before you’re exhausted. Remember that fatigue is part of lupus.
Even if you take medication for lupus, there may be times when the symptoms become worse, causing a flare. You may feel exhausted, suffer joint pain, or some other discomfort just before the flare. If you recognize the signals, go to bed immediately and rest. It can make a tremendous difference. When you feel better, become involved in social activities. It’s great for your health to laugh and have fun. Consider joining a lupus support group where you can share your feelings and be among people who understand your physical challenges. You will see that you are not alone in your struggle, and others can help you to stay positive. You will also have the opportunity to become better educated about the illness.
The prognosis for people with lupus is more optimistic than it has ever been. Human Genome Sciences, Inc. and GlaxoSmithKline PLC teamed together in search of a cure. On April 20, 2010, they announced that they were anxious to file for FDA approval later that year.
The results of two crucial Phase 3 trials of BEN-LYS-TA™ in patients with systemic lupus erythematosus were favorable. The U.S. Food and Drug Administration recommended belimumab (Benlysta®) for approval as a treatment for lupus in 2011 and the drug is now currently available for treatment of this disease. It is believed that BEN-LYS-TA has the potential to become the first new approved drug in more than 50 years for people living with systemic lupus.
While living with lupus can be a challenge, it is possible to enjoy a satisfying and productive life. Be kind to yourself. Allow caring people to love, nurture and encourage you. View each day as a blessing. Small wins are important.
For further information, contact the Lupus Foundation of America at www.lupus.org. They may also be reached by telephone at 800-558-0121 or 202-349-1155.