Lupus Patient Advocate, Navigator or Health Advocate
The concept of patient advocacy in its current form was developed in 1950’s as the treatment of patients grew more and more technically complicated, as a means to make the voice of the patient more readily heard. In today’s world of constantly evolving medical techniques, treatments, and services, the average individual cannot be expected to be thoroughly acquainted with any and all this material. So it becomes the function of the lupus patient advocate to perform a variety of services to ease the burden of the patient, and their family, as they learn to deal with every aspect of the disease.
The primary concern of the lupus advocate is the support of the patient in all aspects of life with the disease, whether they be physical, emotional, or financial. An advocate can assist the patient in investigating available treatment options and educating the patient on the efficacy of each of them, be it pharmacological or surgical. By educating the patient, the advocate can be of great assistance in helping them make an informed decision about their course of action, and the possible side effects and outcomes. Support may also involve recommending counseling services for the patient, and their family members, to help them cope from day to day. Lupus patient advocates may also be of assistance in helping the patient, and their caregivers, deal with any physical debilitation resulting from the disease, and its treatment.
Another aspect of lupus patient advocacy is assistance in navigating the financial aspects of treating the disease. An advocate can act as a liaison between the patient and his or her insurance company, assuring that the patient receives any and all benefits to which they are entitled. When one is dealing with a serious disease, it is quite easy to lose track of other aspects of your life. An advocate can help to seek out sources of assistance which can ease the financial burden of the patient.
Education is also a major function of a health advocate. Both the patient, and their caregivers, are often in need of information about how the disease will affect their lives, both during its progression, and in its aftermath. Patients must be informed about how their condition will affect their mobility, the ability to care for themselves, and if they will be left with any permanent impairment to their lifestyle. Caregivers need to be instructed in mechanisms, or techniques they must use to cope with the patient’s daily care, such as injections, proper care of surgical dressings, etc.
The patient, above everything else, needs to know that there is someone in their corner. Someone who will help them find their way through the confusing, and sometimes daunting, world of modern medicine. Someone who will have their best interests in mind as they face challenges presented every day in their struggle to find, secure, and finance the best treatment available.
What is Lupus?
Lupus which is also referred to as systemic lupus erythematosus is a complicated and poorly understood auto-immune disease. An auto-immune disease refers to a state where the body’s immunity goes against its own organs and tissues. We can compare this to an army that fails to recognize the people it was supposed to protect and instead attacks them relentlessly. Joints, kidneys and any other organs can be affected with corresponding symptoms of the part affected parts being observed.
Symptoms of Lupus
The symptoms can be the general symptoms of inflammation and specific ones that are related to the organ affected. There may be symptoms related to affected kidneys, heart, brain or lungs. Others include:
· A butterfly-like pattern of a rash on the cheek. It may not be seen on all cases of lupus.
· Skin sores on exposed parts.
· Body hotness.
· Chronic tiredness.
· Eye dryness.
· Difficulty in breathing with accompanying chest pains.
· Raynaud’s disease-like phenomenon. This is impaired peripheral blood circulation to the hands leading to cold, blue or white hands when exposed to cold or under stressful conditions.
· Mental impairment symptoms may be observed.
Causes, Risk Factors and Triggers of Lupus
Like many other auto-immune diseases, it not well understood why the body’s immunity turns against its own body systems. There appears to be a poorly coordinated or imbalanced immune reaction which results in the immunity treating some parts of the body as ‘enemies’ that need to be destroyed. Risk factors include:
· Gender. It is more common in women.
· Age. More common between the ages of 15 and 40.
· Race. Caucasians have a lower incidence than Asians, Afro-Americans and Hispanics.
Some of the triggering factors include exposure to too much sunlight, infections and use of certain antibiotics and other medications.
The history the patient gives and the clinical findings a doctor comes up with will make the diagnosis of lupus likely. Some of the investigations carried out include:
· Full hemogram.
· Erythrocytes sedimentation rate (ESR).
· Kidney function tests.
· Liver function tests (LFTs)
· Urine analysis where biochemistry and direct microscopy tests are carried out.
· Specific antibodies test.
· Anti-nuclear antibodies tests (ANA). This is a non-specific test that only helps to make a diagnosis when considered with other factors. It can be positive even in people who don’t show any symptoms of lupus.
· Imaging investigations like X-rays, CT and CAT scans as well as MRI may be necessary in assessing the affected tissues and organs.
· Biopsies from affected organs can also help in determining the treatment to be used.
Treatments of Lupus
Since this is an auto-immune disease, there is no ‘magic pill’ that will eliminate the disorder. Treatment also depends on the state of the disease as there are severe, mild or even remission periods. Common drugs used include:
· Hydroxychloroquine. This is a drug mostly used in the management of malaria.
· Non-steroidal anti-inflammatory drugs (NSAIDs). These reduce inflammation which is a major sign in lupus.
· Corticosteroids. They are used mostly during severe forms of the disease and where NSAIDs have not been helpful. They should be stopped as soon as possible as they can cause serious and long-term side effects.
· Immunosuppressant drugs help to lower the immunity’s aggressiveness. This can conversely lead to the patient being more prone to opportunistic infections.
· Nutritional supplements like omega 3, DHEA, vitamin D and a healthy diet also offer beneficial effects to the patient.
The Statistics of Lupus in the U.S.
According to the Lupus Foundation of America:
· There are about 1.5 million Americans living with lupus.
· 16000 new patients are diagnosed every year.
· The incidence of lupus is higher in females aged between 15 and 44 years.
· Blacks and Hispanics are up to three times more likely to have lupus than Whites.
Despite these statistics, lupus is a disease that can affect all types of people the world over.