Lupus Public Awareness
Michelle Alexander
Axia College of University of Phoenix
HCA/240
February 28, 2010

Overview Lupus is a chronic autoimmune disease that can cause major damage to any organ or tissue in your body. Lupus causes your immune system to become unbalanced and is of unknown etiology. In Lupus the immune system is unable to differentiate between foreign and its own systems cells and tissues. It then produces antibodies that fight the body’s own tissues. Lupus is diagnosed in 90% of women between the ages of 14-44, this is more than the men, but it can affect children and younger teens. It is found in non-whites more than Caucasians (Womens Health 2009). Lupus is not contagious or related to cancer; it is not related to or like HIV (Human Immune Deficiency Virus) or even AIDS (Acquired Immune Deficiency Syndrome).

Who is most affected by Lupus? Lupus can develop in all ethnic and racial groups and 9 out of 10 women. Lupus is most commonly found in women of color such as; African American, Hispanic, Latina, Asian, Pacific Islanders, Native Hawaiians, and Native American. African American women are more than three times higher to get lupus than White American women. African American and Hispanic -Latinos tend to get lupus at an early age and will have more symptoms along with kidney problems. Hispanics have more heart problems and African Americans have more seizures than the other minority groups, this is widely due to the genetics.

Diagnosis of Lupus Lupus is diagnosed in women of childbearing age and can be difficult to properly diagnose. Sometimes it takes several months’ even years before correctly diagnosing Lupus, the symptoms can copy or mimic other diseases. Some people go undiagnosed and there is not any specific testing for Lupus. Some researchers believe that hormones play a role in why lupus is found in females more than males. It is believed that certain factors might trigger the disease could be environment, extreme stress, certain drugs including infections Lupus can be diagnosed by the doctors reviewing the patient’s medical history, completed physical exam and reviewing any laboratory tests; blood and urine (ANA) anti-nuclear antibody that are related to the immune system. There is also a skin and kidney biopsy that can be performed to check for sings of autoimmune diseases. There are 3 types of Lupus: Discoid lupus erythematosus, called DLE- cutaneous meaning limited to the skin surface. Systemic lupus erythematosus, called SLE- is more severe and can affect the skin, joints and any major organ in the body; lungs, heart, brain and the kidneys. About half of the lupus cases have a major organ that is affected. Drug-induced lupus is caused due to prolonged use of prescribed medications. Most symptoms’ are the same as SLE. Most common type of drug-induced lupus medications that treat high blood pressure or hypertension these are called hydralazine and procainmide used for treating irregular rhythms. Most of the symptoms of lupus will fade away once the person stops taking the medications. There is also a Neonatal type of lupus that is rare this comes from women that have lupus and pass it onto their newborn during gestation. The baby may have problems at birth with skin rash, liver problems or a low blood cell count. In some cases the newborn may have a serious heart defect. Most newborns can be treated before or right after birth, about 5% of newborns that have mothers with lupus will develop the illness.

Signs and Symptoms Symptoms can copy other serious illnesses and can go from mild to serious and life threatening. These symptoms can come and go at any time and can affect any part of your body or any major organ. Lupus is a combination of flare ups- symptoms get worse and you are feeling ill and remissions symptoms are better and you feel better. Some of the most common symptoms are; achy joints, high fevers over 100˚, swollen joints, redness or skin rashes such as a butterfly shape across your face, cheeks and nose, extreme fatigue, sensitive to light or the sun, seizures, mouth ulcers or nose sores, and even hair loss. Some lupus patients develop (Raynaud’s phenomenon) fingers turning white and/or blue in the cold. Psychological problems (including personality changes, paranoia, mania, and schizophrenia), seizures, transverse myelitis, and paralysis and stroke (NINDS 2007). My sister-in-law Denni was diagnosed with lupus during her pregnancy with her daughter in 1990. She was always tired her body ached and she kept getting this weird rash on her face and parts of her body. But the doctors told her that is was part of being pregnant, she kept insisting that it wasn’t normal for her to feel this way that she was feeling sensitivity to the sun and her chest constantly hurt when she took a deep breath. Her mother told her that she should ask the doctor to be testing her for lupus since it ran on her side of the family. This is when they got the news and that they baby might be affected. The outcome was that the baby was asymptomatic and has not had any signs or symptoms of the disease. (D. Penney, personal communication, 2010).

Treatment of Lupus Treatment for lupus is to prevent flare ups, reduce organ damage and treat symptoms as they occur. Some treatments use medications for reducing swelling, pain, and calm the immune system as well as preventing joint damage. Drugs as part of the treatment include; NSAID’s Corticosteroids- are aspirin, ibuprofen, and naproxen, these may have some side-effects such as increased appetite, weight gain mood swings and puffy face even acne. Antimalarial drugs- hydroxychloroquine (Plaquenil) and chloroquine phosphate (Aralen phosphate) these are used to treat joint pain, skin rashes and mouth sores. Some of the side effects include nausea, vomiting, diarrhea, blurred vision dizziness, and trouble sleeping. Immunosuppressive agents/ chemotherapy are used for severe cases with major organs not working; these are used to suppress further damage to organs. Side effects include nausea, vomiting, hair loss bladder problems and increase risk of infection and cancer. My sister-in-law still has to take medication for her aches and pains; ibuprofen and naproxen for minor flare ups. She is taking yoga classes for her body and walks and runs five miles three times a week. She has some kidney damage but is not currently on dialysis. She sees her doctor on a regular basis and is doing fine; she is careful of what she does and writes in her log book everyday, to keep track of her condition and what might trigger her episodes of pain. She did not have any more children as she and her husband were afraid that the next child would contract lupus (D. Penney, personal communication, 2010).

Prognosis of Lupus The prognosis for lupus varies widely depending on the organs involved and the intensity of the inflammatory reaction. The course of lupus is commonly chronic and relapsing, often with long periods of remission. Most individuals with lupus do not develop serious health problems and have a normal lifespan with periodic doctor visits and treatments with various drugs (NINDS 2007). Some Lupus patients will have to see a specialist if there is some severe major organ damage such as; rheumatologist, hematologist, dermatologist, neurologist, cardiologist or even a psychologist for a person to cope with this disease. They are also put in contact with the local Lupus organization or support group for further information as part of their treatment in developing and maintain a healthy lifestyle changes. Lupus is the focus of clinical trials; researchers are trying to figure out what roll genetics, hormones, immune system and the environment play in people acquiring lupus. These trials focus on the types of treatment to see if they are safe and effective. Patients as well as family members can get the information and find out how they respond to treatment.

Economic Impact of Lupus The average cost of healthcare per year of a lupus patient is about $12,643, this and the productivity – lost hours of work between the ages of 18-65 was about $8,659 for a total of $20,934 per employee with the disease. Lupus Foundation survey- stated” one in four patients receive health care through a government-sponsored program, such as Medicare or Medicaid.” Two of three lupus patients reported complete or partial loss of income due to complications and inability to work fulltime.

Lupus Awareness Proposal Contact your local Lupus Foundation, go to the internet and contact Lupus.org, CDC, and even the rheumatoid arthritis society. You can get involved with your local community and make people aware that this disease should not be silent. Our local chapter of Lupus Foundation had a “Walk for Lupus Now” it started in Albuquerque, New Mexico at Cottonwood Mall in 2005 and has been in New Mexico over 20 years. My proposal would be we could have a Health Faire for our community and make sure that people who have the signs and symptoms contact their healthcare provider. Send out flyers and contact the local news and radio stations so that the whole city would be of one accord. I would have the local transit company cover their busses with LFANM banners to show the city that we care about your health and for everyone to participate in the health Faire. To reach the community better, I would hire the Hot Air Balloonists to fly over the city with banners to let everyone know about the Health Faire and hope they will want to come and gain the knowledge. I would also like to invite the City officials and the State officials; the Governor and local state Representatives to see if he would make an appearance that might get the public out just to see or hear him speak about the obligation we have to each other about our health and Lupus. We could have a local Tel-a-thon and ask local celebrities to participate and do the entertainment locals from the community. This city is mainly populated by Hispanics/ Latinos and Native Americans as well as African Americans. This would be a wide spread of information that is greatly needed. New Mexico has 2 times the national average cases diagnosed for lupus. Local LFANM is currently distributing the information as well as they can, but most think it can’t happen to them, until it happens. This is true for people who don’t know their family health background and are not aware of what roll genetics play in their health. Our local LFANM conducts support groups for those living with lupus and their families. Currently we have support groups that meet once a month in Albuquerque, Rio Rancho and Las Cruces. Free awareness materials to the public if you are looking for resources like doctors and facilities, we cannot make a recommendation as an organization, but we do have a list of doctors and facilities that offer medical support for lupus. We conduct support groups, answer questions, provide material, increase public awareness, kids with lupus program through UNMH ( University of New Mexico Hospital) and much more (LFANM 2010). I would make sure that the local schools from elementary thru high school was aware and able to get help and the information needed, through the internet, flyers news and radio. I would have the school nurses send out “FAQ fact sheets every other month since our state is twice as susceptible to Lupus. Maybe the website could add some web links to help with reviewing the research that is continually developing and more support groups added for the area that is as large as Albuquerque.

Conclusion Early detection, diagnosis and the proper therapeutic management of SLE- Lupus can prevent premature deaths. Awareness of the disease is not known to many and is listed behind other major diseases. The current treatment methods help 80-90 percent that do not have any organ damage can live a normal life. Between 10-15 percent will die prematurely from complications of lupus, either because of undiagnosed or major organ damage. The CDC reported (MMWR 2002) over the past 20 years an increase in deaths due to lupus among African American women ages 45-64, they are not sure if it is the disease itself or the complications of the disease. Lupus needs more support from Congress and the local government, our families and others need to be more aware of this disease. It seems that Lupus deaths in the future will be out numbering deaths due to heart disease and diabetes as number one killers in America.

References:
Center for Disease Control website (2002). Trends in Death from SLE- United States, 1979-1998 Retrieved February 22, 2010 from http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5117a3.htm
Clinical Trials website (2008). List of Lupus Studies Trials. Retrieved February 27, 2009 from http://clinicaltrials.gov/ct2/results?term=lupus
LUPUS Foundation of America, New Mexico Chapter (2009) Statistics on Lupus Retrieved February 22, 2010 from http://www.lupus.org/webmodules/webarticlesnet/templates/newmexico_programs.aspx? articleid=1265&zoneid=356
National Institute of Neurological Disorders and Strokes (February 2007). Retrieved February 23, 2009 from http://www.ninds.nih.gov/disorders/lupus/lupus.htm
Womens Health website (2009). Lupus Frequently Asked Questions. Retrieved February 22, 2010 from http://www.womenshealth.gov/faq/lupus.cfm