Lupus SK Society Inc.

Working together to conquer Lupus - 1 in 1000 persons in Canada have Lupus

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Sylvia Higgins Memorial Essay - General Category Winner, 2004

This essay was written by Susan Grant. She is a Saskatoon Police Officer, who supervises the Resource Officers for the schools. Her knowledge and experience in this capacity inspired her very creative presentation about lupus to youth.

Tour of the Center of Activation of Lupus

This essay was written in a format that would be attractive to young teens as a method of delivering this very important message.

Welcome to the “take-a-kid-to-work” day here at the Center for Activation of Lupus – Jane Doe Station. My name is Lou and I will be your guide. Today you will learn what my colleagues and I do for a living. We are designated as Lupus Erythematosus Cells or LECs for short. We have approximately two million centers in North America and surrounding area. It is only after years of training and work experience that you can achieve the title of Lupus Erythematosus Cell. This job is very challenging and you have to be well trained in order to be able to attack the many various parts of the body and to induce the desired effect on the organs, joints, skin and muscles.

I would like to introduce you to my colleagues; Syl – he is from the Systemic Lupus Erythematosus (SLE) Work Unit. To be employed in this unit one needs extra training as it is the most intensive work unit of all Lupus units. Syl's work is to attack as many organs, tissues, joints and muscles as he can. Beside him is Dylan from the Discoid Lupus Erythematosus (DLE) Work Unit; most of his work involves the creation of skin disorders. Next we have Doug from the Drug-induced Lupus Unit. He works on a casual basis and comes and goes as needed. His job is to identify drugs that are absorbed into the center and use them where possible, to initiate a lupus operation. When the drug is discontinued, his day is over. Finally we have Nancy from the Neonatal Lupus Unit; she deals with babies of SLE moms. Nancy is rarely needed.

First let's take a tour of the center. This is the Jane Doe Center; most of our centers are female, approximately 90%. Our centers are between 15 and 45 years old; it is rare to see younger centers, although they exist. It also is rare to see onset of lupus in older centers. Many of our centers are African, Asian and Native North American, but there are many Caucasian and Hispanic centers as well.

As we walk along the corridor we will be entering Jane Doe's immune system. This is where we spend a lot of our time. A healthy immune system produces substances called antibodies that help fight and destroy viruses, bacteria, and other foreign substances that invade the body. Our job is to produce antibodies against the body's healthy cells and tissues. These antibodies, called autoantibodies (“auto” means self), allow us to cause inflammation to various parts of the body. Our goal is to cause damage and alter the function of target organs and tissues. Sometimes we have to do a “Joint-Operation” with substances from Jane's own cells or tissues to form molecules called immune complexes. Our goal here is to cause inflammation and tissue injury. As you can see on the screen we have an active “Joint-OP” called Operation Jane Doe in progress right now. Our intelligence tells us that Jane is presently experiencing painful and swollen joints, unexplained fever, and a butterfly formation of a skin rash on her face. She is also extremely tired and fatigued.

Let's continue our tour and visit some of our target organs. First stop is the kidneys.

Downstairs at the kidneys, we would like to see inflammation (nephritis). The desired effect is to impair their ability to get rid of waste products and other toxins from the body. If we are successful we can affect the overall health of the center which then requires extensive intervention by the medical profession through the use of specific drugs. The longer the inflammation occurs the more likely we are to permanently damage the organ. The medical professionals often identify us when they perform a blood or urine test. Once they prescribe the appropriate drug our mission is over.

Let's walk up to the lung area. Here we work hard to inflame the lining of the chest cavity, this is called pleuritis. The result is the center experiencing trouble breathing and chest pain, often in combination with pneumonia.

Moving along to the heart, inflammation of this organ is called myocarditis. Inflammation of the membrane that encloses the heart is called pericarditis. Inflammation of the membrane that lines the inner chamber of the heart is called endocarditis. Our goal is to cause inflammation in any of these areas, all of which cause extreme chest pain.

Now we move to the central nervous system. Our goal is to affect the brain or central nervous system. This can cause headaches, dizziness, memory disturbances, vision problems, stroke, or changes in behavior.

Finally, we also target the blood and the blood vessels. The blood vessels may become inflamed (vasculitis), affecting the way blood circulates through the body. Centers with lupus may develop anemia (a decreased number of red blood cells), leukopenia (a decreased number of white blood cells), or a decrease in the number of platelets (thrombocytompenia). Some centers have abnormalities that cause an increased risk for blood clots.

As indicated earlier, working at the Lupus Activation Center is very difficult. Not only must we affect many different organs, tissues, joints and muscles, we must also ensure we stay one step ahead of the medical profession at all times. Let's go up to the classroom in the brain area and look at some of the research that threatens our work here at the Lupus Operation Center.

Our work here at the center is very mysterious. Working in a lupus center is a little like being a member of the CIA or the FBI. No one knows who we are, where we come from, and exactly what or who we are going to attack next. There are counter agencies out there doing research that have come close to finding answers to these questions. These agencies spend tens of millions of dollars every year trying to discover what we are all about. In some cases they have succeeded.

We have our spies within the medical community identifying the top research projects that threaten our work. So far we have identified a number of findings that may affect the success of our missions.

The first is the issue of genetics. Researchers are suggesting that genetics play an important role; however no specific “lupus gene” has been identified. They have found that several genes, which can run in the family, may increase a person's susceptibility to the disease. When studying twins it was found that lupus is more likely to affect both members of a pair of identical twins, who share the exact same set of genes, than two non-identical twins or other siblings. We still have the scientists puzzled as they cannot determine specifically if lupus is genetic.

The second area is the teamwork approach to diagnosing and treating lupus. Often a team effort between the patient (or center as we call it) and health care professionals assists in identification and treatment of symptoms of lupus, thereby decreasing the success of our missions in many cases. Rheumatologists are doctors who specialize in rheumatic diseases (arthritis and other diseases of the joints, bones, and muscles). Clinical Immunologists are doctors who specialize in immune system disorders. Nephrologists are doctors who treat kidney disease. Hematologists are doctors who specialize in blood disorder. Dermatologists treat skin disease and Neurologists specialize in disorders of the nervous system. When they put their heads together this jeopardizes the potential for long term effects for our center.

The next area is testing. So far researchers have not found a single test that can determine whether a person has lupus. However, several laboratory tests may help the doctor make a diagnosis. The most useful tests identify certain autoantibodies present in the blood of people with lupus. The antinuclear antibody (ANA) test is commonly used to look for autoantibodies that react against the nucleus of a person's cell. Most people with lupus test positive for ANA; however, there are a number of other causes of a positive ANA, including infections, other rheumatic or immune diseases, and occasionally as a finding in normal healthy adults. We have found that physicians are using other laboratory tests to monitor the progress of the disease once it has been diagnosed. A complete blood count, urinalysis, blood chemistries, and erythrocyte sedimentation rate (ESR) all provide valuable information.

The area of treatment includes the use of drugs, change in diet, protection from effects of sunlight, stress reduction and exercise, all of which have had some success in dealing with the symptoms. There has been a large amount of study and research in this area and we have several spies gathering intelligence as we speak.

Another issue is drug dispensing. Research has grown significantly over the years and in fact at times has brought many lupus operation centers into jeopardy. Most of our manpower is dispatched towards surveillance on the drug implementation plans for lupus centers or patients. Our undercover agents tell us that there are several drugs utilized to assist lupus-affected centers. NSAIDSs (non-steroidal anti-inflammatory drugs) are common as well as anti-malarials (disease modifying agents), steroids and immunosuppressive drugs, all which may be prescribed for those centers affected by lupus. These drugs are having a significant impact on our long-term and short-term effects on many centers. They have resulted in lay-offs in many areas as we become overstaffed due to cessation of projects because of drug infiltration.

Our final stop on the tour profiles our biggest challenge. Our research has indicated that the biggest impact on the success of lupus seems to be human love. As we walk along the artery hallway to the heart area, you will notice the large rooms that have been created in behind the organ itself. This is a phenomenon we cannot control regardless of the resources we allocate to it. In the Jane Doe Center for example these rooms have grown exponentially. Last week there were two rooms, the hope room and the love room. This week these rooms have expanded and other rooms have been added. The new rooms are the understanding room (which is huge), the patience room and the caring room. The biggest room we have found is the support room. I can't tell you how many times this week we had to shut down operation due to the infiltration of family support. Our spies have bugged the room of family support and found that there was an abundance of emotional assistance, self-esteem boosting and coping mechanisms. It has been found through our research that the larger the rooms are around the heart, the more likely our mission is to fail. Twenty years ago there were little or no rooms around the heart, which allowed us to utilize specialized tactics such as depression and even suicide. Today, these are becoming rare, and our job is becoming more and more difficult. Unfortunately for the Lupus Activation Center, current research efforts provide continued hope for new treatments, improvements in quality of life, and possibly, a way to prevent or cure lupus. It is likely that my colleagues, Syl, Dylan, Doug, Nancy and I may indeed be out of a job one day soon.

To tell you the truth, after years and years of observing the pain our subjects are experiencing, the rashes, the loss of self-esteem, the fatigue, and possibly death, it would be an honor to sit in the unemployment line one day soon.

That ends our tour for today. May I suggest you look for employment elsewhere? The job of an LEC does not have a bright future. Perhaps you could use your skills for good instead of evil; switch sides and find a cure for lupus.

Research includes the following websites: