The LFA successfully advocated in 2006 for the inclusion of lupus as one of the diseases eligible for funding, with a special emphasis on lupus biomarkers. This was first time that lupus was included in the PRMRP program, which resulted in grants of $2.5 million in new funding for research on lupus biomarkers.

The PRMRP program was established in 1999 and continues to fulfill Congressional intent by funding research of clear scientific merit with direct relevance to the health of the warfighter, the military family, and the American public. Congress appropriated $50 million for the program in FY 2006. PRMRP Congressional appropriations, which had totaled $294.5M through fiscal year 2005 (FY05) have provided funding for 198 projects in more than 60 topic areas.

Penn State University Seeks Candidates for Stem Cell Transplantation

If you have lupus, you probably have many questions. Lupus isn’t a simple disease with an easy answer. You can’t take a pill and make it go away. The people you live with and work with may have trouble understanding that you’re sick. Lupus doesn’t have a clear set of signs that people can see. You may know that something’s wrong, even though it may take a while to be diagnosed.

Lupus has many shades. It can affect people of different races, ethnicities, and ages, both men and women. It can look like different diseases. It’s different for every person who has it.
The good news is that you can get help and fight lupus. Learning about it is the first step. Ask questions. Talk to your doctor, family, and friends. People who look for answers are more likely to find them. This booklet can help you get started.

Lupus is an autoimmune (AW-toe-ih-MYOON) disease. Your body’s immune system is like an army with hundreds of soldiers. The immune system’s job is to fight foreign substances in the body, like germs and viruses. But in autoimmune diseases, the immune system is out of control. It attacks healthy tissues, not germs.

You can’t catch lupus from another person. It isn’t cancer, and it isn’t related to AIDS.

Lupus is a disease that can affect many parts of the body. Everyone reacts differently. One person with lupus may have swollen knees and fever. Another person may be tired all the time or have kidney trouble. Someone else may have rashes. Lupus can involve the joints, the skin, the kidneys, the lungs, the heart and/or the brain. If you have lupus, it may affect two or three parts of your body. Usually, one person doesn’t have all the possible symptoms.

• Lupus is a widespread and chronic (lifelong) autoimmune disease that, for unknown reasons, causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood, or skin.

• The immune system normally protects the body against viruses, bacteria, and other foreign materials. In an autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissue. The immune system then makes antibodies directed against "self."

There are several forms of lupus: discoid, systemic, drug-induced, and overlap syndrome or mixed connective tissue disease.

• Discoid (cutaneous) lupus is always limited to the skin and is identified by a rash that may appear on the face, neck and scalp. Discoid lupus accounts for approximately 10% of all cases.
• Systemic lupus is usually more severe than discoid lupus, and can affect the skin, joints, and almost any organ or system of the body, including the lungs, kidneys, heart or brain. Approximately 70% of lupus cases are systemic. In about half of these cases, a major organ will be affected.
• Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). The percentage of individuals using these drugs who develop drug-induced lupus is extremely small, and the symptoms usually fade when the medications are discontinued. Drug-induced lupus
• In approximately 10% of all lupus cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe the illness.

• Symptoms of lupus often mimic other less serious illnesses.
• Symptoms can range from mild to life-threatening.
• Lupus can go into periods where symptoms are not present, called remission.
• Although lupus can affect any part of the body, most people experience symptoms in only a few organs.

The following lists the most common symptoms of lupus and the percentage of lupus patients who experience them.

Symptom                                         Percentage of Cases

We don’t know what causes lupus. There is no cure, but in most cases lupus can be managed. Lupus sometimes seems to run in families, which suggests the disease may be hereditary. Having the genes isn’t the whole story, though. The environment, sunlight, stress, and certain medicines may trigger symptoms in some people. Other people who have similar genetic backgrounds may not get signs or symptoms of the disease. Researchers are trying to find out why.

• Lupus is NOT infectious, rare, or cancerous or AIDS
• Researchers do not know what causes lupus.
• While scientists believe there is a genetic predisposition to the disease, it is known that environmental factors also play a role in triggering the disease.
• Some of the factors that may trigger lupus include infections, antibiotics, ultraviolet light, extreme stress, certain drugs, and hormones.
• Hormonal factors may explain why lupus occurs more frequently in females than in males.

Anyone can get lupus. But 9 out of 10 people who have it are women. African American women are three times more likely to get lupus than white women. It’s also more common in Hispanic/Latino, Asian, and American Indian women.

Both African Americans and Hispanics/Latinos tend to develop lupus at a younger age and have more symptoms at diagnosis (including kidney problems).

They also tend to have more severe disease than whites. For example, African American patients have more seizures and strokes, while Hispanic/Latino patients have more heart problems. We don’t understand why some people seem to have more problems with lupus than others.

• Based on the results of several nationwide telephone surveys, the Lupus Foundation of America estimates that approximately 1,500,000 Americans have a form of the disease.
• Despite the fact that lupus can affect men and women of all ages, lupus occurs 10 to 15 times more frequently among adult females than adult males.
• Lupus develops most often between ages 15 and 44.
• Lupus is two to three times more common among African Americans, Hispanics, Asians, and Native Americans.
• Only 10 percent of people with lupus will have a close relative (parent or sibling) who already has lupus or may develop lupus.
• Only about 5 percent of the children born to individuals with lupus will develop the illness.

  Diagnosis is usually made by a careful review of:

• a person's entire medical history,
• physical examination, coupled with
• an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.

Currently, there is no single laboratory test that can determine whether a person has lupus or not. It may take months or even years for doctors to piece together evolving symptoms and accurately diagnose lupus.

When symptoms appear, it’s called a “flare.” These signs may come and go. You may have swelling and rashes one week and no symptoms at all the next. You may find that your symptoms flare after you’ve been out in the sun or after a hard day at work.

Even if you take medicine for lupus, you may find that there are times when the symptoms become worse. Learning to recognize that a flare is coming can help you take steps to cope with it. Many people feel very tired or have pain, a rash, a fever, stomach discomfort, headache, or dizziness just before a flare. Steps to prevent flares, such as limiting the time you spend in the sun and getting enough rest and quiet, can also be helpful.

Preventing a Flare

• Learn to recognize that a flare is coming.

• Talk with your doctor.

• Try to set realistic goals and priorities.

• Limit the time you spend in the sun.

• Maintain a healthy diet.

• Develop coping skills to help limit stress.

• Get enough rest and quiet.

• Moderately exercise when possible.

• Develop a support system by surrounding yourself with people you trust and feel comfortable with (family, friends, etc.).

You need to find out what works best for you. You may find that a rheumatologist has the best treatment plan for you. Other health professionals who can help you deal with different aspects of lupus include psychologists, occupational therapists, dermatologists, and dietitians. You might find that doing exercises with a physical therapist makes you feel better. The important thing is to follow up with your health care team on a regular basis, even when your lupus is quiet and all seems well.

Dealing with a long-lasting disease like lupus can be hard on the emotions. You might think that your friends, family, and coworkers do not understand how you feel. Sadness and anger are common reactions.

People with lupus have limited energy and must manage it wisely. Ask your health care team about ways to cope with fatigue. Most people feel better if they manage their rest and work and take their medicine. If you’re depressed, medicine and counseling can help.

Also,

• Pay attention to your body. Slow down or stop before you’re too tired.

• Learn to pace yourself. Spread out your work and other activities.

• Don’t blame yourself for your fatigue. It’s part of the disease.

• Consider support groups and counseling. They can help you realize that you’re not alone. Group members teach one another how to cope.

• Consider other support from your family as well as faith-based and other community groups.

It’s true that staying healthy is harder when you have lupus. You need to pay close attention to your body, mind, and spirit. Having a chronic disease is stressful. People cope with stress differently. Some approaches that may help are:

• Staying involved in social activities

• Practicing techniques such as meditation and yoga

• Setting priorities for spending time and energy

Exercising is another approach that can help you cope with lupus. Types of exercise that you can practice include the following:

• Range-of-motion (for example, stretching) exercises help maintain normal joint movement and relieve stiffness. This type of exercise helps maintain or increase flexibility.

• Strengthening (for example, weight-lifting) exercises help keep or increase muscle strength. Strong muscles help support and protect joints affected by lupus.

• Aerobic or endurance (for example, brisk walking or jogging) exercises improve cardiovascular fitness, help control weight, and improve overall function.

People with chronic diseases like lupus should check with their health care professional before starting an exercise program.

Learning about lupus may also help. People who are well-informed and take part in planning their own care report less pain. They also may make fewer visits to the doctor, have more self-confidence, and remain more active.

Women who want to start a family should work closely with their health care team; for example, doctors, physical therapists, and nurses. Your obstetrician and your lupus doctor should work together to find the best treatment plan for you.

• London Lupus Centre - Treatment, Diagnosis, Research
• Lupus Research Institute
• S.L.E. Lupus Foundation
• Lupus International

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