Diabetic Macula Edema 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 diabetic macula edema 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 diabetic macula edema 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. Diabetic macula edema 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 diabetic macula edema 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 Diabetic Macula Edema?
Diabetic macula edema is a complication of diabetes and more so poorly controlled diabetic state. As a systemic disease, diabetes affects more than just the metabolism of sugar in the body. A common victim of the disease includes damage to blood vessels and nerves. When the small vessels of the retina are compromised it results in plasma leaking out of the vessels which lead some edema on the retina. When this happen the macula (an area referred to as the yellow spot on the retina) is affected and it can lead to impaired vision. If not managed in time, it can lead to total vision impairment and permanent blindness.
There are two types of the disease. These are focal and diffuse. The type is determined by the areas affected on the retina.
The main symptom is usually not seeing well. The loss of vision may be progressive in nature. There may be accompanying symptoms like headache, dizziness or faintness. Other symptoms may be those of diabetes as the primary disease. These will include:
· Excessive thirst.
· Excessive passing of urine.
· General tiredness.
· Having to wake up many times to go to the bathroom (nocturia).
· Loss of weight.
· Oral, vaginal or penile sores.
Causes of Diabetic Macula Edema
The exact cause of this edema is not well understood as it is not a definite outcome for all those who have diabetes. It occurs in only about 1:10 of those with the disease. What is known is that it occurs as a complication of diabetes. Chances are higher where there is accompanying high blood pressure and the kidneys are compromised and there is loss of proteins in the urine (proteinuria). Risk factors include:
· Poorly controlled diabetes
· People with hemoglobin A1c type.
· People who have had diabetes for long.
· Race. Hispanics (non-black), Native Americans and African-Americans are more affected than Whites.
· Diabetics who are obese, smokers, have a family history of the disorder and who take low fruits and vegetables diet have a higher risk.
The diagnosis is done after a thorough history taking and clinical examination of the person. Sometimes the problem is noted during routine eye examination of diabetic patients. Specific tests include:
· Optical coherence tomography (OCT)
· Fluorescein angiography and
· Color stereo photographs.
The three tests help pinpoint the problem areas and determine the mode of treatment. Other tests are:
· Blood sugar tests.
· Urine analysis to rule out proteins, sugar and ketones presence or to assess the kidney status.
· Blood is taken for hemoglobin A1c
· Lipids levels in the body are determined.
· Other diagnostic investigations like X-rays, ultrasound and MRI may be done to rule out other causes, like trauma, that can also lead to macula edema.
There are two main modes of treatment.
1. Drug therapy.
2. Laser treatment.
The drugs commonly used are steroids which include Triamcinolone and Fluocinolone that aim at reducing edema and improving visual acuity. Ranibizumab is a type of antibody that counteracts the effects of certain proteins that enhance the breakdown of the retina wall.
Laser treatment uses a technique called laser photocoagulation to minimize the risk of eyesight loss by coagulating vascular micro-aneurysm (swollen blood vessel) and in that way reduces edema for a given period of time – up to 3years.
U.S. Statistics for Diabetic Macular Edema
Diabetes is the main cause of new cases of blindness in the country. Among these, diabetic macula edema is the top cause. Vision loss risk in un-screened diabetics is 20-30%. If they are discovered early and treatment commenced, this risk drops by up to 50%. By 2007 about 23.6 million U.S residents had diabetes and among the 17.9 who were diagnosed, 50% of them were not getting any comprehensive eye care.