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Living and Coping with Lupus

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Living and Coping With Lupus
Cheryl A Boyd
COM/156
January 15, 2012
Jeffrey Long

Living and Coping With Lupus
Many things pertaining to Lupus are still a mystery. The research to find a cure is an ongoing process with no cure in the near future. What is Lupus? Lupus is a chronic and debilitating autoimmune disease. A person living with Lupus is literally under attack by his or her own body. Lupus makes the immune system attack the body’s tissues and organs. There is no part of the body that is safe from this savage attack. The skin, tissues, organs, and joints are all at risk. A person with Lupus can suffer problems involving the joints, kidneys, heart, lungs, brain, and blood. Lupus although not as well-known as many other chronic and serious diseases such as leukemia, it is far more common. While a full life can be lived with Lupus it depends upon early diagnosis and consist treatment. Lupus left untreated can be fatal. More than 16,000 Americans are diagnosed with Lupus each year and many thousands more suffer from the disease without a diagnosis and do not know the disease he or she is suffering from is Lupus. This deadly and debilitating disease does not only strike in America, there are over fifteen million people stricken with the disease worldwide. Living with Lupus is a constant struggle to live a normal life and cope with the things most people do not even think about each day. I know this for a fact because I was diagnosed with Lupus six years ago and my life and my families lives have never been the same. This disease hit quickly and without warning. While there is at this time no cure for Lupus it is very important to educate the public on the diagnosis, symptoms, and treatment of Lupus.
There are over 1.5 million Americans today that are afflicted with some form of Lupus, while there are over five million worldwide. (Molly’sfund.org 2011) There are many different forms of Lupus, and symptoms vary in each patient and in severity. The most common form of Lupus that a patient can develop is Systemic Lupus Erythematous (SLE). Although (SLE) is the most common form of Lupus there are other types of Lupus as well. Discoid Lupus Erythematous is another commonly diagnosed form of Lupus along with Drug Induced Lupus.
Systemic Lupus Erythematous is the most common form of Lupus. Systemic Lupus Erythematous can attack any part of the body. SLE is a severe chronic illness with major side effects not only on the patients physical functioning but also psychological wellbeing. The disease will change every aspect of a patient’s life and the ability to do normal, everyday things will become a major struggle to accomplish. This is exemplified by the finding that the health related quality of life (HRQoL) tends to be lower in Systemic Lupus Erythematous patients than in patients with other chronic illnesses. (Lupus 2011.20 pp. 290-98) Lupus Nephritises is the most prevalent organ involvement in Systemic Lupus Erythematous. It affects up to 60 percent of patients and results in a substantial and devastating increase in morbidity and mortality.
The next form of Lupus is Discoid Lupus Erythematous or (DLE). This form of Lupus attacks mainly the skin. Discoid Lupus Erythematous causes painful rashes and sores all over the body and often leaves scars and light colored patches on the skin when healed. Discoid Lupus Erythematous is a chronic, scar producing, photosensitive dermatosis. (Jeffrey P. Callen, M.D. www. Medscape.com/article 1065529)
The last form of Lupus is Drug induced Lupus. This form of Lupus tends to go away when the patient stops taking the medication causing the problem. This is usually a much milder form of Lupus and is found more in men than in women. The fact that Drug Induced Lupus is more common in men is associated with the fact that the most common medications that cause Drug Induced Lupus are medications usually prescribed to men for certain types of heart disease. The drugs Hydralazine and Procainamide are two drugs most commonly associated with Drug Induced Lupus. The mechanism(s) for Drug Induced Lupus may vary by drug and by patient. In traditional drug induced Lupus there must be no pre-existing Lupus. ( (drug Saf0 2011. May 1, vol. 34 (5), pp. 357-74) Lupus does not care whom it attacks. It will pick on men, woman, children, and every race and nationality. There seems to be no one group that has immunity to lupus.
There are only a handful of different forms of Lupus but there is a plethora of symptoms that vary widely from patient to patient. These also may vary in the same patient in severness from day to day. Some patients will have all the symptoms at one time and another will suffer a butterfly shaped rash across the patient’s nose and cheeks or a change of the color in the face. According to the Lupus Foundation of America, the most common symptoms of Lupus include a rash, fatigue, joint pain and swelling, swollen glands, chest pain when breathing, sensitivity to the sun, a low blood count, mouth sores, seizures, hallucinations, and kidney problems. (www. Lupus.org 2011)
Jennifer a patient diagnosed with Lupus in 2010 states that her biggest struggle with Lupus is just learning to accept the fact she has Lupus. It is very difficult to learn and to deal with the pain, fatigue, and other symptoms you have to deal with on a daily basis. Jennifer deals with the disease and its ramifications one day at a time. She is very thankful for the support and understanding she gets from her family and friends.
Cheryl a 48 year old mother of two was diagnosed with Systemic Lupus in 2006. She has gone from being an extremely active mom that coaches her children’s baseball and softball teams to finding it hard to walk now. She states the hardest thing about dealing with Lupus is all of the things you have to give up because you are simply not able to do them anymore. It is hard to walk because of painful swollen joints, it is hard to cook or sew or make cookies for your family because of the swelling and pain in the joints of the hands and fingers. It is hard not knowing what tomorrow will bring and not being able to make plans with your family. You never know if you will be able to get out of bed in the mornings and function as a normal person. It is a major accomplishment to be able to cook dinner or go to the grocery store.
Although Lupus primarily affects women and women of color are two to three times more likely to develop Lupus anyone can get Lupus. Men, women, Children, and teens are all at risk for Lupus. At present there is no cure for Lupus. Even though Lupus is more common than other chronic illnesses such as Leukemia it is a lot harder to diagnose. There is no single test to diagnose Lupus and it is often a very long and costly diagnosis to make. A doctor may have to run several tests and research a patient’s medial history to make a definite diagnosis of Lupus. The doctor may have to run many blood and urine tests on a patient to see if the patient has an over active immune system. In some cases the doctor may also have to do biopsies of the patient’s skin and kidney tissues to know for sure if there is an accurate diagnosis of Lupus.
There are many different ways to treat Lupus. The treatment a patient gets will depend on the symptoms of each patient and the severity of those symptoms. A doctor may prescribe Non Steroid Anti Inflammatory Drugs (NSAIDS) for swollen joints and pain. If the damage to the joints, swelling, and pain the patient suffers is more severe other stronger medications as well as NSAIDS will be prescribed. There are creams and ointments for rashes that can also be prescribed to help the patient. Many doctors commonly prescribe anti malaria medications such a plaquenel and corticosteroids to help treat and control the symptoms of Lupus. In very severe cases where the medications are not controlling the disease well a physician may prescribe chemotherapy drugs in low dosages. These drugs used to treat cancer can be given in a low dose to a Lupus patient to help control the severe and debilitating symptoms of the disease.
Lupus does not discriminate and will attack a person regardless of their sex, race, age, or nationality. Lupus is very hard to diagnose and there are many different things a doctor may have to do to get a firm diagnosis of Lupus. When a patient has been diagnosed with the disease there are many different treatments a person may have to try to find one that works for him or her. The treatment a patient gets depends on the severity of the symptoms they suffer. There are thousands of people diagnoses with Lupus in America each year and millions worldwide. Though Lupus is not as well-known as other chronic diseases like Leukemia and Multiple Sclerosis it is far more common. Living with Lupus is a constant and every day struggle to be able to function normally. A patient diagnosed with Lupus can live a full live if diagnosed early and is diligent with his or her treatment. The daily struggle with pain, stiffness, and fatigue makes it very difficult for a Lupus patient to do those things most people take for granted each day. Going on vacation, cooking for their family, working, and making plans with friends become increasingly hard to do. The medications you take are constantly changing and the treatment you get at any certain time depends upon the severity of the symptoms you have at the time. Medications such as NSAIDS, anti-Malaria Drugs, and Chemotherapy drugs help to battle the symptoms of the disease. With all that is known about Lupus the most important thing is still unknown. At this time there is still no cure for Lupus. The patients diagnosed with Lupus will have to continue to live with the fact that their body is attacking itself and causing them to live a life of extreme pain and fatigue due to an over active immune system. There are many organizations like Molly’s Fund and The Lupus Foundation of America that are working and searching for a cure. We have to make sure these organizations have the funding they need to do the research and hopefully one day finds a cure for this devastating disease.

Reference Page

1.) www.Molly’sfund.org
2.) The Lupus foundation of America
3.) www.lupus. org
4.) Jeffrey P. Callen, M.D. www.medscape.com/article 1065529
5.) (drug Saf) 2011 May, 1; vol su(5), pp 357-74
6.) Lupus (2011)20, pp 845-854

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