My name is Ashmita and I’m a 17 year old girl. My family originated from India and my parents are Hindus. “You have Systemic Lupus Erythematosus!” These words, which echoed in my head two years ago, will forever be engraved in my memory.

Systemic Lupus Erythematosus (SLE) is not just a minor disease with a long name… That was what I thought lupus was when I first heard its name from my family doctor. I even laughed out loud but, when the doctor and my mother looked at me with a sort of silent pity on their faces, I understood there was more to it than just a minor disease like influenza. I thus made the fascinating discovery of a disease which I had never come across before, not even in a book!

Lupus is an autoimmune disease. Dr Smith, seeing my confused gaze, told me about it in simple words: “Your body’s immune system is like an army with hundred of soldiers that fight foreign substances entering the body like germs and viruses. In autoimmune diseases, the immune system is out of control. Instead of attacking foreign substances, the soldiers attack the healthy tissues in the body…” Despite his clear explanation, questions were trotting in my mind: What causes lupus? How did I get it? Who gets lupus? Is it only bad persons like drug addicts who get it? What do doctors do about it? What kind of medicine will I get? How can I cope with it? I would learn all this in the next two years.

Lupus isn’t a simple disease. A pill cannot make it go away. There are no clear visible signs when you have lupus. Something was wrong with my body, but it took some time for doctors to diagnose what I really had. Anyone can get lupus. But researchers have found that 9 out of 10 people who have lupus are women. African-American women are three times more likely to get lupus than white women. It is also common in Hispanic/Latino, Asian and American-Indian women.

Two whole years I have suffered from several flares - the appearance symptoms - of lupus. Before knowing I had lupus, I used to have fever very often. Doctors could not explain why, despite the precautions I was taking. Usually after exercises or a hard day, I would get chest pains. I was tired and breathless all the time, and couldn’t go out in the sun without precautions like wearing hats, carrying an umbrella, having sunglasses and applying sunblocks on my face and exposed parts of my body. My classmates were forever making fun of me and my strange clothes.

When I was younger, I was a very bright student but suddenly I could not retain even the easiest lesson. My performance started shooting down. But fortunately, because of my good results and good conduct as a child, my teachers felt I was only going through a bad phase and gave me bonus marks so that I didn’t have to repeat my class.

When I found I had lupus, at first it was as if a burden was lifted from my head. The next day, I explained to my friends and teachers why I was slow in class and my strange behaviour. The teachers started looking at me with different eyes. At first, I enjoyed the pity and attention, but in the long run, I got fed up being seen so differently from others. My classmates behaved queerly. No one came too close to me. Whenever I had something to tell them, they backed off as though they would contract the disease. Despite my saying that lupus cannot be spread from one person to another, they kept a safe distance from me. Some children even held their breath when I talked to them, so as not to inhale the same air as me. This made me sad and depressed. I returned home in tears. I made a fuss before going to school as I could not bear the difference which everyone thought there was between me and the others and the way I was treated differently.

My relatives treated me with care, lots of attention and love. As a result, my cousins were jealous of me. They seldom talked to me. I couldn’t tell my uncles and aunts to stop fussing about me, as I knew that this would break their hearts, so I kept silent and talked very rarely. Even my parents treated me differently from my little sister. They looked at me with sad eyes. I sometimes overheard my mother talking to my father at night when I passed near their room. Mother would talk about me and would burst into tears. I had enough of this life, where I made everyone feel sad. Why was I born if God knew that I was destined to make everyone around me so miserable?

The doctors made a health team to treat me. I was seen by several specialists. It was a hard time as I hated hospitals, doctors, etc. Each month and, if had complications, each week, I saw my health team for treatment. Sometimes it was kidney problems or severe joint aches or even low blood pressure. I even had hallucinations. I saw people coming out of thin air to get me and I got scared to sleep alone. My mother kept awake and reassured me the whole night. My parents tried their best to give me the medical support I needed, but it cost a lot of money and our middle-class family was getting poor. But not once did my parents give up hope and they gave me the best treatment.

Then came my seventeenth birthday! This had a great impact in my life. My uncle came with a man, Mr Vergé, whom he explained, was a member of an association helping people with lupus to live normal lives and control their illness and flares. Mr Vergé was ready to take charge of me for a whole year to change my life. I couldn’t go to school now and, if I could control my disease, I might be able to go back to school and even to university. I accepted his proposition. He was very kind to me and came to see me everyday. My parents were doubtful at first, but they got accustomed to his visits! He gave me the will to live.

<I>“When I found I had lupus, at first it was as if a burden was lifted from my head. The next day, I explained to my friends and teachers why I was slow in class and my strange behaviour. The teachers started looking at me with different eyes.”</I>

He made me test several medicines, most of which worsened my flares. But finally, he set up a kit for me with the medicines, which soothed my pain and made my symptoms more bearable. Mr Vergé even helped me learn how to know when I’ll be getting my flares one day in advance. I began to regain my lost sense of humour and happiness. He made me spend less time exposed to the sun and rest several times a day even at school. I stopped getting hallucinations and sudden dizziness. I always knew when a flare was coming and prepared myself for it. As a result, the pain diminished and became more bearable. It was as if a new life had started for me.

Mr Vergé and his association sent out brochures to inform people about lupus and make them feel more concerned about it. The association invited me to give talks to those who had lupus to give them some hope and the will to live. I even gave advice to some of them. I started becoming a known person. I was even on television once. I had never thought my life would have so much importance one day. Sometimes, when I think about these two most difficult years of my life, I hope that no one goes through what I have been through. I now know that God sent me on this earth to let hope exist even in persons suffering from severe diseases like lupus. I have decided that later I will become a scientist and research on lupus. Maybe someday I will learn how I got Systemic Lupus Erythematosus. Maybe I watched too much television as a child or I ate too many sweets…

Winner Form VI Category

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<B>An unknown disease</B>

Systematic Lupus Erythematosus (SLE) was called a form of lupus (Latin for &#8220;wolf&#8221;).  Lupus is an incurable multi-symptomatic disease which manifests itself in three ways: the discoid lupus erythematosus (discoid LE), which is limited to skin symptoms, systematic lupus erythematosus and drug-induced lupus, which can be caused by a reaction to certain prescribed medications.

SLE is the most common form of the disease, attacking mainly women of 15-45 years old and more blacks than whites. It is a chronic disease where the immune system, instead of attacking harmful organisms such as viruses, attacks the white and red blood cells in the body. Unlike discoid LE, SLE can affect any organ or structure of the body, especially the skin, kidneys, joints, heart, gastro-intestinal tract, brain and serious membranes-membranous linings of organs, joints and cavities of the body.

SLE is known as a disease with a thousand faces. Symptoms vary widely from person to person so that each person&#8217;s list of symptoms is different. It can affect the organs in any combination imaginable and a complete list of all the symptoms may fill many pages. Because the symptoms come and go suddenly, it may take time before the person becomes aware that something is wrong.

To help distinguish SLE from other diseases, physicians of the American Rheumatism Association established a list of 11 abnormalities which, when combined, point to SLE. To make a diagnostic of SLE, the patient must have at least four of these 11 abnormalities at any time since the beginning of the disease. Some of these abnormalities include a butterfly-shaped rash over the cheeks and across the bridge of the nose, sensitivity to sunlight, central nervous system problems, arthritis, antibodies killing one&#8217;s own cells, among others.

Unfortunately, SLE has no specific cure. However, some medications such as cortico steroids and immuno-suppressants can control the disease and prevent flares. However, patients who require steroids frequently may develop obesity, diabetes and osteoporosis. 

The exact cause of SLE is unknown. There are three mechanisms by which lupus is thought to develop: genetic predisposition, environmental causes and drug reaction. Research indicates that SLE may have a genetic link. Several genes need to be affected for lupus to occur. They may occur randomly or be a result of heredity. The other mechanism may be related to environmental factors. They include medication, extreme stress, exposure to sunlight, hormones and infections. Measures such as avoiding sunlight or using lotions to block out sun&#8217;s rays may have some effect.

If ever I am diagnosed with SLE, before accepting my illness and accepting the fact that my life has changed, I will probably go through a range of emotions. I will be relieved that I can finally put a name to these symptoms, I will be worried and will not stop asking myself whether SLE is fatal, if it can be cured or if I have to live like this all my life. I will also feel anger and will ask myself: Why me?


<b>Self-confidence</B>

Most lupus patients find the strength to face this disease, those pains and the changes in their physical appearance by getting close to God and their family. The family is a wonderful source of support. If I suffer from lupus, I will therefore talk to my family and tell them how I feel. Joining a national lupus charity club is not a bad idea. The members of the club will provide me with support. I will also search for information about lupus on the net. One example of such a site is found at http://www.uklupus.co.ok/cope.html. 

We often see that adolescents make fun of  lupus patients only because of their physical appearance. This is a very bad attitude, even if these youngsters do not know anything about this disease. We, adolescents, voices of tomorrow, must support those suffering from SLE. We must hide our pity and fear. We must act normally around these people and help them where we can. We must give them hope and help them build up their self-confidence again.

Lupus can affect a person&#8217;s appearance and therefore self-confidence, but there are ways to solve these problems. There are many good cover-up cosmetics (also available on prescription) to cover up rashes. If I suffer from SLE, I will choose clothing which helps to disguise or distract the eye from the effect of swelling. If hair loss is a problem, there are a lot of natural-looking wigs available. If I look better, I will be less self-conscious and consequently feel better. I will also read other&#8217;s personal experiences on the net. There are such examples at http://www.uklupus.co.uk.story2.html Reading those can help me see that I am not alone, that there are lots of sufferers all across the world.

Maybe SLE prevents us from doing lots of jobs, but still, SLE does not mean death. I can live an almost normal life with this disease. I just have to listen to my doctors and be in tune with my body. If I suffer from SLE, I can still turn a hobby into a small business. If I like to paint, I can do so and why not open an art gallery later on? I can write songs, poems, books. I can play music, I can do some gardening when I am not so tired and can sell beautiful flowers to others later on. Young people are said to be creative, imaginative and skillful, SLE can help me further develop this creativity.

Despite all my problems, my motto will be &#8220;live life to the full&#8221; because life is too short to just sit and feel sorry for myself. I will keep a positive attitude and look forward to the future with anticipation and hope. Medical progress in relation to lupus has dramatically increased in recent years, mostly due to the largest funding organization in the United States, the Alliance for Lupus Research. I will therefore not lose hope since it is said that &#8220;hope is a rope which swings us through life.&#8221; 



<B>Winner Form 4/5 Category

Pavanee ANNASAWMY</B>

<B>Loreto College of St Pierre</B>