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Age-related Macular Degeneration (AMD)

Frequently Asked Questions (FAQs)

What is Macular Degeneration?

Macular Degeneration is the name for several similar conditions that are characterised by a breakdown of the macula.

The word "macula" comes from the Latin for "spot"; it is the centre portion of the retina that makes central vision, the vision directly in front of you, possible. The macula is very small: only about three by five millimetres (about the size of a ladybug) covering about 10 percent of the retina.

What causes Macular Degeneration?

There are two basic types of Macular degeneration - Age-related and early onset or Juvenile - and they will be explained in detail in separate sections.

Age-related Macular Degeneration (referred to as AMD) usually does not develop until the sixth or seventh decade of life, although early onset cases are becoming more common in patients as young as 40. Because of the later onset of this disease, it is difficult to determine if it is inherited, but studies are showing familial patterns of the condition, indicating that there may be genetic causes. There are also other aspects of your health that are risk factors for Age-related Macular Degeneration; these will be discussed later.

Early onset Macular Degeneration appears to be largely genetic; that is, it is a condition that is programmed into your cells and not caused by injury or infection or any other external agent. Certain genes that are necessary for normal vision give faulty messages to the cells in the macula, leading to their progressive degeneration and eventually to vision loss.

To understand why and how Macular Degenerations occur, scientists must look to a variety of disciplines. Increasingly sophisticated research at the cellular level is providing insight into the processes that cells undergo whey they die, and how one step leads to another.

The study of molecular genetics, cell biology, biochemistry, and how these and other fields interact with each other has provided an abundance of avenues for researchers to pursue. The symptoms of Macular Degeneration, like those of other retinal diseases, vary greatly and range in severity from one person to another.

What is Dry AMD?

Dry AMD is the more common form of Macular Degeneration. It is also referred to as atrophic, nonexcudative, or drusenoid form. This form accounts for 90 percent of Age-related Macular Degenerations.

Dry AMD is characterised by the build-up of drusen, small yellowish deposits, beneath the macula. The layer of photo receptor cells in the macula begin to atrophy, or die, as some of the cells break down. These changes, may, in turn, result in a distortion of vision that is most apparent when reading. Often if one eye has dry AMD, the other eye will also show some signs of the condition. However, dry AMD does not usually cause total loss of reading vision.

What is Wet AMD?

Wet AMD accounts for 10 percent of patients with AMID. It is also called choroidal neovascularisation, subretinal neovascularisation, exudative form, or disciform degeneration.

In wet AMD, new abnormal blood vessels begin to grow beneath the macula, in a thin layer of tissue called the choroid. The choroid is the main source of oxygen and nutrients for the retinal photo receptors, and it is the only blood supply for the macula. New fragile blood vessels develop which may leak fluid and blood, and then cause the choroid and retina to deteriorate. This causes the retinal layer to blister under the macula, and the photo receptor cells to degenerate. At this stage, there is marked disturbance of vision in the affected eye.

What are the symptoms?

The most common symptoms are blurring of vision with particular difficulty discerning details, both up close and from a distance. People with Macular Degeneration may have blind spots, resulting in a dark or empty area in the centre of their field of vision. They may also notice distortions of lines and shapes, either in everyday objects (e.g. crooked door frames) or in tests given by the eye doctor.

Colour vision may also be diminished, although peripheral vision and night vision usually remain unaffected. Because Age-related Macular Degeneration could begin in one eye, the remaining good eye will take over on its own to compensate for vision loss. It may be some time before the second eye is seriously affected enough for an individual to notice vision problems. Others do notice a sudden loss of vision. If you experience a sudden vision loss or distortion, it is important that you see your eye care professional immediately.

How are macular degenerations diagnosed?

The early signs of Macular Degeneration are usually detectable in a thorough eye exam even before the disease begins affecting vision. The doctor will examine the eye with special lenses, which help to show the interior of the eyeball through the pupil, the opening in the centre of the iris through which light rays enter the eye. Tests for Macular Degeneration include:

  • Acuity tests which measure the accuracy of your reading and perception vision at specific distances in specific lighting situations. This is the test that people are most familiar with and typically involves a standard eye chart.
  • Colour testing which can help to determine the status of your cone cells. Since cone cells are the retinal cells that interpret colour, your doctor will be better able to determine the health of these cells through your performance on these tests. There are several types of colour tests which measure various aspects of vision.
  • A dark adaptation test which will measure how well your eyes adjust to changes in lighting. Information from this test can help the doctor to better understand the current function of your rod cells, which are the retinal cells responsible for night vision.
  • A fluorescein angiogram which allows inner eye structures to be visualised. A non-toxic dye is injected into the patient's arm and it moves through the bloodstream, including the blood vessels in the eyes. Photos are then taken of the retina and macula, which will identify new blood vessel growth and leakage from blood vessels. New blood vessel growth is a feature of wet age-related Macular Degeneration, which is explained in detail in the section of this booklet describing the different forms of Macular Degeneration.

Check your vision with an Amsler grid

The Amsler grid test may be helpful in revealing signs of wet Age-related Macular Degeneration (AMD). It is not a substitute for regularly scheduled eye exams.

Directions:

Wear your reading glasses (if you use them).
Sit at a comfortable reading distance (12” or 30cm) from the grid in a well lit room.
Cover one eye with your hand. Look at the centre dot at all times. If you notice any area on the grid that is blurred, distorted, discoloured or missing, you may be exhibiting signs of AMD and should contact your ophthalmologist promptly.

Are there any specific risk factors related to AMD?

As we have seen, AMD is related to ageing, but it certainly does not affect all older people. There is a growing body of evidence that suggests genetic factors can determine whether or not someone will get AMD.

Other studies have looked for additional conditions that may be associated with AMD and have found a number of factors besides age that are associated with an increased risk of developing AMD.
These include a history of hypertension (high blood pressure) and/or cardiovascular disease, smoking, a family history of AMD, hyperopia (farsightedness), light skin and eye colour, and lens opacities (cataracts). Both men and women are at risk for this disease.

The presence of these risk factors in people with AMD has been noted, but the relationship of the various factors to the disease itself has not been systematically studied and it is not clear just why the links are present.

How common is AMD?

Researchers estimate that one in 2000 people in the developed world are affected by AMD. Among non-diabetics, it is the most common problem affecting the retina, and it is the major cause of legal blindness in individuals over the age of 65. As the population enjoys a longer life, the number of those affected by AMD will increase as well.

How quickly does AMD progress?

Most cases of AMD progress very slowly over a period of years. Vision may remain stable between annual eye examinations, and many patients retain a reasonable amount of peripheral vision. However, wet AMD typically progresses much more rapidly than dry AMD. The majority of people who experience severe vision loss from AMD have the wet form.

Do Macular Degenerations lead to total blindness?

Most people with Macular Degeneration do retain some peripheral vision, and they learn to optimize the use of their remaining vision. Each case differs. However, many will be classified as legally blind". Legally blind individuals are those whose best visual sharpness or acuity (with glasses or contact lenses, if needed) is 20/200 or worse in their better eye; or whose visual field, regardless of acuity, is restricted to a 20 degree diameter (10 degree radius).

Can people with Macular Degeneration drive?

This is a difficult question. Many people with mild forms of Macular Degeneration do drive legally, and do not have problems. It would be best to discuss your visual limitations and their effect on driving with your eye care professional. Driving is a symbol of independence for many people, and individuals with progressive vision loss may be unwilling to face the fact that their vision impairment may impede save driving. Often people with Macular and other retinal degenerations speak of "near miss" accidents that force them to confront their vision loss and acknowledge that it is affecting their driving. It is important to remember that your driving affects not only you but other drivers and pedestrians, and that the results of an error can ultimately be life-threatening.

If I have drusen, will I develop AMD?

Not necessarily, although the presence of drusen may indicate that your eyes are at some risk for developing AMD. Drusen are deposits that contain complex lipids (fats) and calcium and can accumulate as a person ages. It is not known how they form but it has been suggested that they are undigested waste products from RPE cells. There are two basic types of drusen: "hard" and "soft".

Hard drusen are small, round, solid deposits that sit under the RPE without causing structural damage. Most people start accumulating some drusen after the age of 40, and hard drusen alone do not impair vision. However, hard drusen may advance to soft drusen, although this does not always happen.

Soft drusen are more likely to be associated with vision loss. They are less uniform, involve a larger area under the RPE, and contain other cellular substances in addition to lipids. Development of soft drusen may cause the RPE to separate from other eye tissue layers.

It is important to understand the significance of drusen, particularly if you have a family history of Macular Degeneration. There are many people with drusen in both eyes and no impairment to their vision at all. However, it is not known who will go on to develop a vision problem and who will not, so if your eye doctor tells you there are drusen in your eyes, you should continue to seek eye care regularly, as well as use an Amsler grid to monitor your vision yourself.

What are retinal detachments and tears?

Retinal detachment occurs when the photo receptors (the rods and cones) separate from their underlying tissue layers. This causes a loss of vision in the area of the separation. Retinal detachments can sometimes be repaired or partially repaired with surgery. Retinal tears are splits in the retina that may cause vision disturbances, such as flashes of light or floaters. Retinal detachments and tears may be caused by physical injury or may be inherited. Although they may occur in people with Macular Degenerations, they are not necessarily a consequence of the disease.

Are cataracts associated with Macular Degeneration?

It is not unusual for an older individual with a Macular Degeneration to develop a cataract, which is a clouding of the lens of the eye. Cataracts that significantly interfere with vision can be surgically removed. While cataract surgery cannot improve the vision loss due to retinal degeneration, it can alleviate the added loss caused by the cataract, Whether or not surgery improves the vision often depends on the extent of retinal changes. Because surgery is not advised for everyone, it is important to discuss the details of your individual case with an eye care professional.

Is AMD related to other retinal diseases?

Age-related Macular Degeneration is just one type of a group of retinal degenerations that are characterised by a breakdown of the photo receptor cells, leading to impaired vision. While AMD is characterised by a loss of central vision, Retinitis Pigmentosa is associated with night blindness and a progressive loss of peripheral vision leading to "tunnel" vision. These symptoms are not the same, but as researchers get closer to uncovering the causes of these conditions, there is increasing evidence that they are related. For example, it has been found that different defects of the same gene are responsible for certain forms of RP and Macular Degeneration.

Will others in my family be affected?

The late onset forms of Macular Degeneration are not known to be inherited in a straightforward pattern such as autosomal dominant or recessive. However, familial patters have been observed, indicating that inheritance is involved to some extent. Some surveys have estimated that 15 to 20 percent of AMD patients have one or more first-degree relatives who are also affected.

AMD presents a special challenge for genetic researchers because it is difficult to determine the exact role of genetics when a disease occurs late in life. A number of research projects are now underway to look specifically at the role of genetics in the development of AMD.

In one study, occurrence of AMD is being compared in groups of identical and non-identical twins. Genes from blood samples of people with Macular Degeneration are being searched for disease-causing changes. From these and other studies, scientists hope to learn more about the relationship between genes and Macular Degeneration.

Because it is not the same gene that causes Macular Degeneration in everyone with the condition, but an assortment, each with its own particular variations, the hereditary pattern of these diseases differs from family to family, although the gene mutation will be consistent within one family. You can get the best information about the likely pattern of the disease in your own family by consulting with a genetic counsellor or an eye care professional who specializes in hereditary retinal degenerations. They can help you learn how the disease is inherited in your family and the chance of passing it on to your children.

Is there any way to prevent AMD?

While research supported by the member organisations of Retina International and other private and government agencies worldwide is adding to new understandings of AMD, at present there is no known method of preventing its occurrence. However, there are studies that suggest that adjustments in lifestyle may help reduce the risk of developing AMD.

Regular eye exams may allow for early diagnosis of AMD. Individuals at risk - for example, those with degenerative vision loss in one eye, soft drusen, or positive family history - should have regular eye examinations by an eye care professional after the age of 50 and self-monitor their vision daily with the use of an Amsler grid. Without self-monitoring, a person may not realize his or her vision is impaired until the disease has reached advanced stages.

How can nutrition influence the occurrence of AMD?

Researchers found that people who consumed the highest quantity of spinach, collard greens and other dark green leafy vegetables foods that are rich in carotenoids, were less likely to have the advanced form of AMD, compared with people in the study who ate the least amounts of these foods. The findings also suggest that people should not rely on vitamin supplements as their main source for vitamins, minerals and nutrients, but instead should eat a balanced diet that includes a wide range of vegetables.

Does sunlight influence the onset of AMD?

Avoiding intense, bright sunlight may help to reduce the retinal degeneration due to AMD. Good quality sunglasses, hats and visors can help people to protect their eyes from the sun.

Does smoking influence the onset of AMD?

Cigarette smoking has been linked to increased risk of developing AMD. It is recommended that persons stop smoking to decrease their chance of developing AMD.

What treatment options are available for AMD?

Retina International and its members support extensive multi-disciplinary research programmes in an effort to find the causes prevention, and possible treatment for Macular Degeneration and other forms of retinal degenerations. Researches studying retinal degenerative diseases may contribute to the understanding of others so that, for example, research related to RP may also benefit those with Macular Degeneration. Information from research projects is shared with others in the field in order to advance the goal of understanding all forms of retinal degeneration. Listed below are details of some of the latest advances in research and treatments for AMD.

Dry AMD

Although several new drugs are being investigated and approved by regulatory agencies around the world for the treatment of the exudative (wet) type of AMD, aside from cessation of smoking and a healthy diet of dark green leafy vegetables and fruits supplemented by zinc and anti-oxidant vitamins (Vitamins E, C, and beta carotene), very little is available to help patients with atrophic or "dry" AMD to prevent progression to more serious stages of debilitating disease. A blood filtration process, called Rheopheresis, is being marketed in Canada as a treatment for dry AMD by OccuLogix Inc. Little is known about what causes the conversion from dry to wet AMD, and this is the subject of ongoing research studies. Check back regularly for updates to this website as research studies are published.

Wet AMD

At present people with macular degeneration have three possible treatment options: thermal (heat laser); Photodynamic Therapy; or anti-VEFG drugs.

Laser Photocoagulation

Laser photocoagulation is a surgical procedure involving the application of a hot laser to seal and halt or slow the progression of abnormal blood vessels. In the 1990's laser treatment was the only therapy available for AMD.

Through the use of a high-energy light that turns to heat when it hits the parts of the retina to be treated, laser photocoagulation seals the choroidal neovascularization (CNV) and inhibits the leaky blood vessels growth, preventing further vision deterioration. A scar forms as a result of the treatment, and this scar creates a permanent blind spot in the field of vision. Vision does not usually improve after laser treatment and may even be somewhat worse. However, loss of vision following laser treatment, though immediate, is generally less severe than the eventual loss of vision that usually occurs if laser treatment is not done. In many cases, some visual distortion will disappear after laser treatment.

Photo Dynamic Therapy (PDT)

Photodynamic Therapy (PDT) (trade name Visudyne) uses a non-thermal (or cold) laser with an intravenous light-sensitive drug to seal and halt or slow the progression of abnormal retina blood vessels. This treatment does not produce a blind spot on the retina. The light is shone directly at the targeted tissue and the drug accumulates in these cells. It therefore reduces damage to normal surrounding tissue and allows the treatment to be given again as needed. . However, early diagnosis of AMD is key, because once vision is lost due to of the growth of abnormal blood vessels, it cannot be reclaimed by either treatment.

Anti-angiogenesis Therapies

As of February 2006, pegaptanib sodium (trade name Macugen) is approved for use in Canada, the United States and Europe. The United States Food and Drug Administration (FDA) approved Macugen for treatment of neovascular (wet) age-related macular degeneration. FDA approval came following successful clinical trials demonstrating that the drug reduced vision loss in 70 per cent of clinical trial patients. It is also very encouraging that the drug is effective for all kinds of wet AMD, whether in the early or late stages.

Pegaptanib sodium (trade name Macugen) is what researchers call an anti-VEGF drug, or in other words, a drug which works by targeting the proteins which act to trigger abnormal blood vessel growth and leakage. Anti-VEGF drugs are delivered directly to the eye by an injection, which is repeated every four to six weeks.

Other anti-VEFG drugs on the horizon include ranubizimab (trade name Lucentis), from Genetech and Novartis. On June 30, 2006, the US Food and Drug Administration (FDA) announced approval of Lucentis (Ranibizumab). AMD Alliance International (AMDAI) loudly applauded the decision, which effectively makes available in the USA a ground breaking treatment for wet age related macular degeneration. This approval is based on the evidence presented from several years of rigorous clinical trials, in which Lucentis was shown to maintain vision in 95% of trial participants, and improve vision in approximately 30 to 40% of trial participants. This decision means that treatment with Lucentis will now be widely available in the USA through retinal specialists. The FDA approval of course only covers the USA. Introduction of Lucentis in Europe is expected to follow in the coming year. Fighting Blindness and the AMD Alliance International of which it is a member, applauds the introduction of new treatments, which bring hope and help to those with macular degeneration.

Angiostatic Therapies

In other research developments, a completely different class of AMD drugs, called angiostatic therapies, is showing promise. This class of drugs propose yet another approach to treatment of AMD, in this case by administering a type of steroid to stop the abnormal growth of blood vessels in the eye. Unlike the anti-VEGF treatments, angiostatic drugs are delivered through a canula, to the back of the eye.

One possible angiostatic treatment is anecortave acetate (Retaane), from Alcon Laboratories. Although early clinical results were not as stellar as hoped, scientists working on the treatment believe this may be a result of drug delivery problems, not the drug itself and are making adjustments. On May 24, 2005, the USA Food and Drug Administration released what is called an "approvable" letter, basically meaning that the drug is approvable but some further study is required. Alcon recently reported that their researchers and officials will "meet with the FDA to discuss the approvable letter, the clinical studies submitted with the NDA and other ongoing clinical studies for RETAANE® suspension to determine the steps necessary to gain final approval for the wet AMD indication." Retaane has received market approval for use in Australia. In early March 2006, a request for market approval in Europe was withdrawn, by Alcon, from regulatory consideration.

Combination Therapies

Other investigations are also showing promise, including combination therapies, which combine traditional PDT therapy with new drugs to increase the effectiveness of PDT. Combination treatments pair one or more existing or new AMD treatments to see if the end result might be greater than what could be achieved individually. More and more medical practitioners believe that combination methods are the way of the future for wet AMD treatment. Usually the idea is that one kind of treatment will take care of existing AMD in the patient, and the other will help to prevent any future developments.

Position Statement on Avastin (bevacizumab)

The role, efficacy, and safety of anti-vascular endothelial growth factor (VEGF) therapies for use in the treatment of age-related macular degeneration (AMD) were first established by clinical trials of pegaptanib sodium, (Macugen, [OSI] Eyetech/Pfizer) and later by clinical trials for ranibizumab (Lucentis, Genentech, Inc.)

Pegaptanib Sodium

Phase 3 clinical trials for pegaptanib sodium demonstrated that after 1 year of treatment, individuals who were treated with 0.3 mg and 1 mg pegaptanib sodium experienced less vision loss than those who were treated with a placebo. Individuals who were treated with pegaptanib sodium experienced lasting results for 2 years. The most common side effect (occurring in approximately 1.3% of cases) was endophthalmitis, which was caused by the injection.

Ranibizumab

Phase 3 clinical trials for ranibizumab demonstrated superior results after 1 year of treatment, and showed that the majority of individuals who were treated with ranibizumab improved or maintained vision 2 years later. The improvement in visual acuity endpoints in the ranibizumab-treated groups (0.3 mg and 0.5 mg) was maintained at year 2, while individuals in the control group continued to experience vision deterioration. At 2 years, at least 90% of individuals who were treated with ranibizumab maintained or improved vision compared to approximately 53% of individuals who were treated with sham injections. Treatment side effects were mild to moderate, affected less than 3% of individuals, and included conjunctival hemorrhage, increased IOP, vitreous floaters, and endophthalmitis.

Broadening the Anti-VEGF Theory

Ranibizumab was developed by Genentech, Inc. The company had previously developed bevacizumab (Avastin, Genentech, Inc.) an anti-VEGF drug that is currently approved by the Food and Drug Administration (FDA) as an intravenous therapy for metastatic colorectal cancer patients. Bevacizumab for use in cancer therapy is currently being investigated. Ranibizumab is a molecular fragment of an antibody, and bevacizumab is a full-length antibody. They are both thought to work by a similar principle - the drug blocks the production of VEGF. VEGF, which is also produced by cancer cells, prompts the abnormal growth of blood vessels, also known as angiogenesis. Bevacizumab binds with VEGF and interferes with its ability to stimulate blood vessel growth.

In early 2004, Philip Rosenfeld, MD, PhD, and colleagues at the Bascom Palmer Eye Institute in Miami, Fla, initiated the use of bevacizumab in the treatment of AMD. Their first study was called Systemic Avastin for Neovascular AMD (SANA). In this and subsequent studies, which consisted of intravitreal injections of bevacizumab, individuals who were clinically followed reported improvements in visual acuity comparable to ranibizumab with no serious adverse events. It is important to note that these clinical studies were not conducted as randomised clinical trials.4,5 Based on these results, the use of bevacizumab for the treatment of AMD appears to have been broadly accepted by retinal specialists around the world.

The use of bevacizumab in the eyes, an indication for which it is not approved, is called off-label use. It is reasoned conjecture on the part of the AMD Alliance International that the off-label use of bevacizumab was first suggested for reasons of economy and availability in the face of a significant unmet need. Until the June 30, 2006 FDA approval in the USA, treatment with ranibizumab was not available unless an individual was registered in a clinical trial, or, as is possible in some European countries, receives the treatment on what is called a 'named-patient' basis.

Antioxidants and Vitamin Therapies

One working hypothesis is that a cause or contributing factor to Macular Degeneration involves the formation of chemicals in the body called free radicals. Free radicals are thought to result, in part, from exposure to sunlight and other forms of ultraviolet light. They cause cellular damage by taking electrons from molecules in healthy cells. This process, called oxidation, has been linked to a variety of health problems including heart disease and cancer. Substances called antioxidants may counteract the oxidation process; the body produces its own antioxidants, and these are helped by antioxidants that we ingest through food or vitamin supplements. Vitamins C, E nd carotenoids, including beta-carotene, are examples of potent antioxidants. However, which of these is helpful to AMD is not yet known.

The work investigating a link between vitamins and Macular Degeneration is still in preliminary stages. Recommendations regarding nutritional supplementation and light avoidance for patients with Macular Degeneration are expected to emerge from studies now in progress.

Can an eye transplant cure Macular Degeneration?

No. Medical technology is not yet advanced enough to transplant the entire eye. It is simply impossible to reconnect the nerves leading from the eye to the brain. What you may have heard referred to as an "eye transplant" is probably the process of corneal transplantation, which is a valuable vision saving procedure for some people, but unfortunately has no relationship to the problems in the eye caused by Macular Degeneration. However, retinal cell transplantation is a procedure that may have promise for people with Macular Degeneration in the future, although it is still in its early experimental stages Retinal cell transplantation is described below.

Retinal Cell Transplantation

Transplantation of retinal cells has shown some encouraging results in animals, although it is important to emphasize that this is not yet a treatment available for use in humans. Retinal cell transplantation is still in preliminary stages of investigation in the laboratory. Before a procedure can be tested in humans, long-term beneficial effects must be proven and possible side effects must be determined. Such research might take several more years.

The good news is that studies so far have found that when photo receptor cells are transplanted into the retinas of animals, some features of normal photo receptors are either maintained or develop after transplantation. However, there is not yet conclusive evidence that retinal cell transplants or similar procedures in animals with a retinal degeneration result in long-term improved or restored vision. Nevertheless, the research done so far has been promising enough for the American Foundation Fighting Blindness to expand a grant award programme aimed at scientists who are investigating several areas of basic science that could lead to new therapies that might repair or replace damaged retinal cells.

Special challenges in AMD research

Because AMD does not develop until late in life, and all body tissues undergo changes associated with ageing, it is difficult to determine which eye findings are normal in those over the age of 50, and which may be predictive of AMD. The American Foundation, along with the American National Eye Institute, is working to define normal ageing, classify AMD types, define genetic components, define risk factors, develop new diagnostic techniques, analyse eye tissue layers and how they interact, and develop animal models that imitate human AMD.

Gene Therapy

As researchers identify more of the mutant genes that contribute to Macular Degeneration, it becomes possible to think about curing the defect at the most basic cellular level. Gene therapy is what many scientists feel is the answer of the future for many forms of retinal degenerations. It is based on a simple logic: if a gene is defective, replace it with one that is not defective. While this may sound simple, the actual procedure of gene therapy is very complex.
Gene therapy might be described as a form of drug therapy in which the "good" gene itself is the drug, which is introduced into the body to replace the "bad" gene. There are a number of reasons that retinal degenerations are diseases that seem particularly suited to the use of gene therapy. First and foremost, some of the defective genes for early onset inherited Macular Degeneration have been identified. Also, there are a number of applicable animal models in which gene therapy can be tested for effectiveness and safety. And the outcomes of gene therapy can be tested by reliable and non-invasive visual examination of the retina. Finally, a treated eye can be compared to an untreated eye in the same patient, giving researchers the ideal conditions for conducting a controlled scientific experiment.

While all of the above factors make gene therapy a promising future approach for treating Macular Degeneration, there are still many obstacles. One key question is how to actually introduce the DNA of the good gene into diseased cells. Researchers have found that a neutralized virus can act as a transporter of the gene to the degenerating photo receptor cells, which seem to be particularly good targets for this type of gene transfer.

What assistance is available to help cope with AMD?

This information is helpful in learning how to physically cope with Macular Degeneration and similar diseases. But what about emotional aspects? What assistance is available to help me and my family cope with Macular Degeneration?

There are many devices and techniques that help people with Macular Degeneration maximize the use of their remaining vision.

The white cane is probably the most visible aid, and some people with Macular Degeneration find it a useful navigational aid if their vision loss progresses beyond a certain stage. The cane is a form of non-optical aid; that is, it does not have an actual effect on your eyes, although it may help you see or cope with vision loss. Other non-optical aids include guide dogs, audio tapes, and large print books.

There are also electronic aids. These include closed-circuit televisions (CCTV), reading machines, and talking computers, An increasing number of computer programmes are addressing the needs of the visually impaired, making it possible to easily enlarge type on the screen or provide an audio or Braille version to go with what is shown on the screen.

Optical aids are devices that work to improve your vision to some extent. These include Corning and NOIR glasses, the Fresnel prism, telescopes and magnifiers. With advancing technology, some of these devices are becoming increasingly sophisticated and offering new opportunities for people with retinal degenerations to maximize their usable vision.

To determine which aids may be most useful for you, it is suggested that you get a thorough low vision evaluation from a specialist, Contact the RP Foundation for more information on low vision services in your area.

While research findings provide hope for the future, there is no actual treatment for people with macular degeneration. Are there other ways that people with this condition can enhance the quality of their lives? It is important that individuals and families know that there are resources available to help them cope with the life-changing conditions Macular Degeneration may bring. People with Macular Degenerations may rind it helpful to discuss their questions and concerns with other people who have similar experiences. The RP Foundation Fighting Blindness can help people get together to exchange information about these common issues in their lives and explore possible solutions for some of their problems. You may also wish to speak with a mental health professional to assist you and/or your family in dealing with the many changes that can be related to Macular Degenerations.

How can I assist a person with AMD?

Age-related macular degeneration (AMD) is a difficult condition to understand, largely because the eyes of a person with AMD look normal. The person with the conditions may still able to manoeuvre around obstacles; can see a white piece of fluff on a dark carpet and yet we will walk right by a neighbour or best friend without recognising them.

Those with AMD want people to understand that they are "visually impaired," not "clumsy," "standoffish," or "illiterate." They will sometimes fake "seeing" because it is easier than explaining that they have no central vision. If a companion says, "Just look at that picture," many will reply, "Oh yes!" rather than explaining, yet again, that they cannot see that kind of detail. Also it is difficult to locate items for example, one could ask a family member 'Have you seen my umbrella' answer 'yes, it's over there'. Now where is over there? The person may be pointing in the general direction but the affected individual can not see where they are pointing so needs to a more detailed explanation. Is it left, or is it right etc. So sometimes the entire family will need to be re-educated.

Caregivers need to get as much information as they can about vision loss, and share that information with the people they are caring for and their families. If you are a caregiver to someone with any form of vision loss, we urge you to:

  • Become informed; learn as much as you can about the condition.
  • Be patient - adjusting to vision loss takes time.
  • Contact a member organization of Retina International.
  • Ensure the person you are caring for receives skills training and assessments for adaptive tools.
  • Meet other people with the same condition.
  • Meet other caregivers.

When a person is diagnosed with AMD, it changes not only their own lives, but the lives of their families and friends. Upon diagnosis painful emotions such as disbelief, panic, anger, and frustration can be experienced by an individual and often family and caregivers are on the receiving end of these feelings. What can really help an individual to come to terms with vision loss is an increase in confidence and skill level - and that takes time.

As a carer it is important to be as informed as you can about the condition of the person receiving care and educate their network of family and friends. Eventually, these steps will help the affected individual feel confident, in control, and willing to accept help when needed without feeling dependent on others.

By working together with caregivers and family members, those with AMD or any form of vision loss can live with dignity, confidence, safety, and a strong feeling of self-worth.

 


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Retina International Statement

Retina International Is Seeking A Cure For
Retinitis Pigmentosa (RP), Macular Degeneration, Usher Syndrome and Allied Retinal Dystrophies