Multiple Sclerosis 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 multiple sclerosis 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 multiple sclerosis advocate to the support 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. Multiple sclerosis 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 multiple sclerosis 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 Multiple Sclerosis?
Multiple sclerosis is an immune-mediated disease that makes the body’s immune system attacks the nerves covering, myelin sheath. Unlike an auto-immune disease, there is no antigen that has been isolated so far. Damaged myelin sheath forms scarring tissue, sclerosis hence the name of the disease. This sclerosis leads to a disruption of nerve performance between the brain and the rest of the body. The damage cannot be undone as of now. But research on the disease is ongoing.
Symptoms vary depending on the nerves most affected and to what degree the damage has occurred. The symptoms may be mild, moderate or severe. They are a reflection of the nerves affected. They include:
· Unexplained fatigue and increasing weakness can be early signs of the disease. It can be severe enough to interfere with a person’s daily activities.
· Numbness or burning sensation on certain parts of the body. Others describe this as a pins and needles sensation.
· Walking difficulty.
· Muscle stiffness and spasms.
· Dizziness and syncope attacks.
· Visual problems.
· Poor bladder and bowel control
· Sexual health problems. The problem can be progressive as the concerned nerves get more damaged. This can also be a secondary problem in view of the stress the illness creates.
· Inability to recall and process information.
· Depression and other emotional changes. Depression can be caused by the disease itself or can be a reaction to all the problems caused by the disease.
· Dysphagia - pain on swallowing.
· Loss of or deteriorating speech.
· Hearing problems.
· Convulsions are not common but they occur in some patients.
· In advanced cases patient may be unable to walk and this may lead to being bedridden with all its potential complications like pressure sores.
Causes and Risk Factors
What makes the body act against its own myelin sheath is not known. The following are some of the risk factors associated with the disease.
1. Genetic predisposition.
2. White people have a higher risk than blacks and other races.
3. Geographic location. People living away from the equator are at a higher risk. It is not known why.
5. Metabolic disorders like diabetes and thyroid disorders.
6. Naturally occurring Vitamin D deficiency.
7. Childhood infections due to certain bacteria and viruses.
It appears that the environment and certain risk factors work together for the disease to manifest.
How Multiple Sclerosis is Diagnosed
It takes several considerations to come up with a diagnosis of multiple sclerosis. The history, clinical examination, laboratory and imaging investigations all work together to confirm the diagnosis. The investigations include:
· Confirmation of nerve damage.
· Cerebral spinal fluid (CSF)
· Evoked potential (EP) tests measures the electrical response in the brain when certain parts of the body are stimulated.
· Blood tests to rule out infections and other conditions that can cause myelin sheath damage.
Treatment of multiple sclerosis is a multi-disciplinary affair. It involves different specialists and rehabilitative measures.
During severe attacks corticosteroids and plasma exchange are the preferred measures.
The other measure is to try to modify the disease so as to slow it down and minimize relapses and complications. These measures include using some of the following medications.
· Beta interferons
· Dimethyl fumarate
· Mitoxantrone (Novantrone)
Other steps are determined by the specific symptom targeted. If there are muscle spasms, a muscle relaxant may be prescribed. Physical therapy plays a major role as well. Other medications can be given to help control fatigue, bladder and bowel problems
U.S. Statistics for Multiple Sclerosis
The data for multiple sclerosis is not very up to date. The year 2002 statistics showed that an estimated 400000 people lived with the condition. This was a significant increase from the previous estimates of 123000 in the early eighties.