About Macular Degeneration

A New Zealand Guide to Macular Degeneration

Contents

Who is this booklet for?
Dedicated to saving sight
Introduction
Foreword
How does the retina work?
How does macular degeneration affect vision?
How can early signs of macular degeneration be detected?
Clinical examination for macular degeneration
What are the types of macular degeneration?
What treatments are available?
Are genetic and lifestyle factors important?
Research into causes, treatment and prevention
Your questions answered
Royal New Zealand Foundation for the Blind
Further Information
Low Vision Clinics
Retina New Zealand
Retina New Zealand contact addresses
Acknowledgements
Help fight retinal degenerative disorders
Copyright May 2001

Who is this booklet for?

MACULAR DEGENERATION (MD) is an eye disease that damages the MACULA, the part of the RETINA responsible for reading vision. A person with MD may have difficulty reading the newspaper or recognising friends as they pass on the street. At least ten thousand people are affected with MD in New Zealand. This condition is the leading cause of vision loss in adults: it exceeds both glaucoma and cataract in this respect.

This booklet is for individuals with MD, their families and friends. If your eye specialist has told you that you have MD, you will have many questions. It is often difficult to take in all the information at once. This booklet addresses the most commonly asked questions about MD.

There are two main types of MD. These are AGE-RELATED macular degeneration (AMD) and JUVENILE macular degeneration. AMD usually does not develop until after the age of 50 years. A mixture of genetic and environmental factors are thought to cause AMD. In juvenile MD, a single gene defect can give a person a very strong likelihood of developing macular degeneration during childhood or early adulthood. If you wish to know about juvenile MD, we suggest that you read both this booklet and the booklet "A Family Affair: a New Zealand Guide to Inherited Retinal Degenerations". The latter booklet is also available from Retina New Zealand and provides information about hereditary retinal degenerations.

Dedicated to saving sight

Retina New Zealand is a consumer group of the Royal New Zealand Foundation of the Blind. Retina New Zealand is an incorporated society created to help those who are visually impaired due to retinal degeneration.

Retina New Zealand is committed to:

• Finding the cause, prevention and treatment of retinal degenerative disorders.
  
  
• Creating public awareness.
  
  
• Establishing links with Government organisations, ophthalmologists, optometrists, scientists and social services.
  
  
• Keeping its members informed about developments in medical research, physical and visual aids, entitlements of the blind and partially sighted.
  
  
• Forging links with similar societies throughout the world.
  
  
• Pressing for Government funded research into retinal degeneration and raising money to foster research.

Introduction

If you have been told that you have macular degeneration, there will be challenges as you face your changed situation. Please use this booklet to help you learn about macular degeneration. You can follow up with a phone call and speak with one of our Retina New Zealand peer supporters - they have been through something of what you are now experiencing.

You are of course a unique person. So gather the knowledge and strategies that help you to meet your particular needs. I found valuable support from family and friends, and from individuals with the same condition. I recently read "Twilight" a gripping autobiography about what it means to have macular degeneration written by Henry Grunwald, a former Time magazine editor. There were some aspects of my experience that Grunwald helped me to understand, there were other challenges I faced that he did not address in useful detail. So I continue my search for self-awareness.

The search for ways to cope has led us to band together in Retina New Zealand. But we are also bound by hope - the hope that research will help people like us to be granted effective treatments. You might want to join our organisation and perhaps contribute to our public education, peer support, research or blindness prevention programmes. You will be welcome.

Anthony Haas
President
Retina New Zealand

Foreword
By the Right Honorable David Lange, CH.

May I compliment the authors and Retina New Zealand on this publication. It writes of the categories within the broad definition of macular degeneration, explains in a coherent way the causes of it and the prospects for its treatment and management.

I can but write from the experience of another"age related" condition. It is unnerving when visual acuity deteriorates in a short time and depressing when one becomes unsighted (mercifully briefly). It is amazing how many people think you are snubbing them in the street, how often you miss the step, lose your pen or glasses and generally struggle to do those things which had never required a second thought.

This book is a blend of technical explanation and a resource reference. We are referred to organisations committed to maximising the quality of life of those affected by MD and to inspire, by their support and expertise, hope and purpose in life to those who are daunted by the challenge of remaking their lifestyles.

That's why I like it.

How does the retina work?

The eye is like a camera (see the diagram above). The CORNEA and the LENS at the front of the eye focus light onto the RETINA. The retina is a delicate multi-layered tissue that lines the back of the eye. The retina contains light-sensitive cells called PHOTORECEPTORS that act like the photographic film in a TV camera. They record light images, convert those images instantaneously into nerve signals and respond automatically to changes in light levels.

Groups of photoreceptors are organised within the retina to convert the light images into meaningful neural patterns. The coded visual information is transmitted via the OPTIC NERVE to the brain for further processing.

Damage to different parts of the eye has characteristic effects on vision. In macular degeneration, the light sensitive photoreceptor cells in one particular area of the retina called the macula are damaged. To understand how this damage affects vision the following information about photoreceptors and their distribution in the retina is helpful.

The photoreceptors come in two varieties and each has a different function. Six million CONES record colour vision in bright light. Three types of cones enable us to recognise over 150 colours and countless shades of those colours. One hundred and twenty five million RODS are highly sensitive to light and are responsible for non-colour "grey-scale" vision under dim lighting conditions.

The rod and cone photoreceptors have different and complementary distributions over the retina. As mentioned earlier, the retina lines the curved surface at the back of the eye. A small pale yellow area about half a centimetre in diameter called the MACULA is located in the centre of the retina. Contained within the macula is the FOVEA, a shallow pit in the retina. The cone photoreceptors are distributed throughout the retina but are highly concentrated in the macula, and, in particular, the fovea.

When the eye looks directly at an object, the part of the image that is focused on the fovea is the part that is most accurately registered by the brain. This means that the fovea is the area of greatest VISUAL ACUITY and is needed for tasks involving fine visual discrimination, such as reading small print. The rod photoreceptors are distributed throughout the remainder of the retina and are important in detecting movement in PERIPHERAL or SIDE VISION. By contrast, the cone photoreceptors in the macula are important in CENTRAL vision.

The retinal tissue receives oxygen and nutrients from the blood supply. The blood vessels of the CHOROID supply the photoreceptors through the RETINAL PIGMENT EPITHELIUM. In order to achieve the highest possible visual acuity, the retinal blood vessels do not enter the area that lies directly over the fovea. The retinal pigment epithelium is also responsible for recycling wastes from the photoreceptors. Both the choroid and retinal pigment epithelium must function correctly for healthy photoreceptors.

How does macular degeneration affect vision?

People with MD have difficulty with central vision and with any task that demands fine visual discrimination. For example reading, driving and sewing. However peripheral vision (side vision) and night vision are usually unaffected. This remaining vision enables people with MD to care for themselves and to remain active.

The pictures below can give your friends and relatives an idea of what the world looks like for a person with MD. Two friends at a restaurant table are giving their order to a waiter. When looking at the menu, the woman with MD sees only a blurry white area. The surroundings although somewhat unclear, are recognisable. When her view shifts to her friend, it is impossible to distinguish her features, but she can now see that the menu is printed.

	Normal Sight
	Sight affected by macular degeneration: looking at the woman in the centre of the photo
	Sight affected by macular degeneration: looking at the menu

What are the symptoms of macular degeneration?

The symptoms vary greatly in severity, but the most common signs are:

• Blurring of central vision.
  
• Difficulty seeing fine details.
  
• Distortion of lines and shapes.
  
• Difficulty seeing or distinguishing colours.
  
• Sensitivity to bright, outdoor light.
  
• An obvious blind spot, a SCOTOMA, in the centre of the visual field.

How can early signs of macular degeneration be detected?

MD can begin in one eye and compensation by the unaffected eye will often mask early symptoms. The first eye may be seriously affected before an individual notices a loss of vision. Even before MD begins affecting vision, it is usually detectable by a thorough eye examination from an eye professional. The MOST IMPORTANT THINGS TO DO are to have EYE EXAMINATIONS EVERY SECOND YEAR and to SELF-MONITOR VISION WEEKLY with the use of an AMSLER GRID.

These precautions are especially important for people at risk such as:

• People who already have degenerative vision loss in one eye.
  
  
• People who have soft DRUSEN. Drusen are small yellowish deposits that accumulate beneath the macula. There are two types: hard and soft, with the latter being more likely to signal future retinal problems.
  
  
• People with a family history of MD including AMD.
  
  
• People over 50 years old.
  
  
• People who are heavy smokers.

With an Amsler grid you can carry out a simple home test that helps you to detect early signs of distortion in vision. A card with this grid is inserted in the back of this booklet. The front of the card contains instructions on how to use this grid. The reverse contains explanatory notes. Remove the card and attach the grid to a place where you will see it regularly e.g. bathroom mirror, pin board or fridge door.

Clinical examination for macular degeneration

For advice about your own vision, it is essential to consult an eye professional. Accurate DIAGNOSIS of an eye condition, information about the PROGNOSIS for future progression of the condition, and advice on currently available treatment options, lifestyle adjustments and support services will help you to make informed choices. Your eye care may involve contact first with an OPTOMETRIST, a non-medical person trained in examination of the eye and in the provision of corrective glasses and subsequently with an OPHTHALMOLOGIST, a doctor who is a specialist in disorders of the eye. Some ophthalmologists are RETINAL SPECIALISTS with a particular interest in disorders of the retina.

Clinical tests to assess macular function may include:

• Visual acuity test, to measure the eye's ability to clearly see detail and shapes at specific distances in specific lighting situations. This typically involves an eye chart that displays letters of progressively smaller size. In imperial measurement, normal vision is 20/20 which means that you are able to read characters on the eye chart at 20 feet that a person with normal acuity can see at 20 feet. In metric measurement, normal vision is 6/6 which means that you are able to read characters on the eye chart at 6 metres that a person with normal acuity can see at 6 metres. 6/60 vision means you are able to read characters on an eye chart at 6 metres that a person with normal acuity can see at 60 metres.
  
  
• The Amsler grid test, to check for distortion of vision.
  
  
• Colour vision tests, used to determine the status of your cone photoreceptor cells, which detect colour.
  
  
• Visual field test, to test peripheral vision
  
  
• Fundus examination. Special lenses are used to view the interior of the eye through the pupil.
  
  
• FLOURESCEIN ANGIOGRAM, A non-toxic dye is injected in the patient's arm and it moves through the bloodstream including the blood vessels in the eyes. Photos are then taken of the retina that will identify new blood vessel growth and leakage from blood vessels.
  
  
• Electroretinogram (ERG) measures the electrical activity of the retina and how it changes with light.

National Contact Addresses:
NZ Association of Optometrists
The National Director
NZ Association of Optometrists
PO Box 1978
Wellington
Phone 04 473 2322
Email admin@nzao.co.nz
Website www.nzao.co.nz

The Ophthalmologist Society
Secretary/Treasurer
Dr AJ Simpson
Harley Building
137 Cambridge Terrace
Christchurch 1
Phone 03 366 5228
Email a.b.simpson@xtra.co.nz

What are the types of Macular Degeneration?

The term DEGENERATION implies a gradual deterioration for one reason or another. The eye conditions that fit within the overall group of macular degeneration can be divided into two main types, AGE-RELATED macular degeneration (AMD) and JUVENILE macular degeneration. AMD usually does not develop until after the age of 50 years whereas juvenile MD affects vision during childhood or early adulthood. AGE-RELATED MACULOPATHY (ARM) is the term for mild changes visible in the retina (e.g. drusen) but no vision loss. The term maculopathy makes no judgment as to whether the condition will progress or remain stationary.

Most cases of AMD are thought to involve a complex mixture of genetic and environmental factors. By contrast, in juvenile MD a defect in a single gene can give a person a strong likelihood of developing macular degeneration. An individual with AMD may have a few close relatives who are also affected but, unlike juvenile MD, a specific inheritance pattern is only rarely identified. Those rare families in which large numbers of family members are affected by AMD are of great interest to researchers.

The following sections discuss AMD and juvenile MD in more detail.

Age-related Macular Degeneration

There are two sub-types of AMD. These are commonly called "dry" and "wet" AMD. Because AMD occurs in older people, in the past it was sometimes called senile macular degeneration: this is no longer used.

Dry AMD

• Also called ATROPHIC MACULAR DEGENERATION. It has been suggested that atrophy, a wasting due to loss of nutrition or neural stimulus may be the underlying cause.
  
  
• Accounts for 90 per cent of all AMD cases.
  
  
• Small yellowish deposits called DRUSEN accumulate beneath the macula. These deposits are thought to impair the light-sensing photoreceptor cells in the macula.
  
  
• Usually involves a progressive loss of central vision over a period of years and usually does not cause a complete loss of central vision.

Wet AMD

• Also called EXUDATIVE MACULAR DEGENERATION. Both names refer to the importance of blood vessels in this condition.
  
  
• Accounts for 10 percent of AMD cases.
  
  
• The light-sensing cells of the macula are nourished by the CHOROID, an underlying network of tiny blood vessels. In wet AMD, new blood vessels begin to grow beneath the macula. These abnormal blood vessels are fragile and may leak fluid and blood. This process is called NEOVASCULARIZATION and the resulting damage can lead to the loss of central vision within a few weeks or months.
  
  
• This form of AMD is usually a more serious condition than dry AMD and makes up the majority of AMD patients who develop severe vision loss.

Juvenile Macular Degeneration

Also called INHERITED MACULAR DYSTROPHY. The term DYSTROPHY implies an underlying problem was present during growth and development of the macula, Considerable progress has been made in identifying and understanding the genes responsible for juvenile MD. Genes are the units that determine all our hereditary characteristics. Humans have about 30,000 different genes.

There are many types of juvenile MD. The most common of these is Stargardt disease. The different types of juvenile MD include:

• Best disease or vitelliform dystrophy.
  
• Dominant drusen.
• Leber Disease or Leber Retinitis.
  
• Peripapillary (pericentral) choroidal dystrophy.
  
• Pigment pattern dystrophy, butterfly-shaped pigment dystrophy of the fovea, north Carolina macular dystrophy, macroreticular [spider] dystrophy or Sjogren reticular pigment epithelium dystrophy.
  
• Sorsby macular dystrophy
  
• Stargardt disease or fundus flavimaculatus
  
• Stationary cone disorders.

It is important that all people with an inherited form of MD understand the genetics of their own condition and the probability of passing it on to their own children. Hospital genetic services are available to provide this genetic assessment.

For more information about inheritance patterns and genetic counselling, please refer to the Retina NZ booklet entitled A Family Affair, a New Zealand Guide to Inherited Retinal Degenerations.

Those readers interested in particular forms of inherited MD or contacting individuals with their particular condition may find useful the websites and chatgroups listed in the Further Information section.

What treatments are available?
Two treatments suitable for some people with the wet form of AMD are described below. These two treatments for wet AMD cannot restore lost vision but can retard further loss. And so early diagnosis and treatment is important.

• Laser photocoagulation. In LASER PHOTOCOAGULATION a beam of laser light is directed into the eye and focused on the leaking blood vessels. Upon contact, the laser energy turns into heat and cauterises (photocoagulates) the blood vessels thereby sealing the leaky areas.
  
  
• Photodynamic therapy. A more sophisticated version of laser treatment called PHOTODYNAMIC THERAPY has recently been developed. This procedure uses dyes that target new blood vessel growth. The dyes are also light-sensitive and enable surgeons to use low intensity lasers to better target the abnormal blood vessel growth.

For advice about your own case, consult with a retinal ophthalmologist regarding the suitability of currently available treatment options. Experimental approaches with potential as treatments for MD are discussed later in this booklet.

For many individuals, it is not yet possible to treat the MD itself. However education in how to cope with visual impairment is likely to be of benefit. Low vision aids available from low vision clinics or learning to use peripheral vision effectively may be helpful. Orientation and Mobility instructors and other specialists are employed by the Royal New Zealand Foundation for the Blind. Further information can be obtained by contacting Retina New Zealand or any branch of the Royal New Zealand Foundation for the Blind.

Are genetic and lifestyle factors important?

We do not know why AMD develops in some older people and not in others. More research is needed. Studies of AMD in relatives of people with AMD and in pairs of identical and non-identical twins suggest that genetic and environmental factors are both important. For example one study found that close family members have more than twice the risk of developing the disease when compared with the general population.

Little is yet known about the genes involved in AMD. However excellent progress has been made in identifying and understanding the genes responsible for juvenile MD. It is hoped that these genes will also provide insights into the genetic causes of AMD.

Environmental factors that may be important include:

• Smoking (a well-established strong risk factor)
  
• High blood pressure
  
• Cardiovascular disease
  
• Sun exposure (ultraviolet light)
  
• Farsightedness, light skin and eye colour

The following adjustments in lifestyle and diet may reduce the risk of developing AMD:

• Do not smoke. Cigarette smokers have an increased risk of developing AMD. Unfortunately, studies found that the risk of developing AMD remained high even after having quit for more than 15 years.
  
  
• Eat healthy foods: The general health benefits of a balanced diet are well established. Diets high in saturated fats and cholesterol may increase the risk of AMD. Diets rich in green leafy vegetables may reduce the risk of AMD. Studies are being done on the benefits of vitamin and mineral supplements for people at risk of MD.
  
  
• Protect your eyes from the sun: Prolonged exposure to bright sunlight may increase the risk of developing wet AMD. Good UV blocking sunglasses, wide brimmed hats and visors may help to prevent damage.

Research into causes, prevention and treatment

Before 1971 little or no research had been undertaken into retinal degeneration. Now major research is being carried out in many countries, largely because of the stimulus provided by the Retina societies.

Each member country of Retina International has a Medical and Scientific Advisory Board. Their function is to assess research projects and advise on scientific matters relating to retinal degeneration.

The Scientific and Medical Advisory Board of Retina New Zealand includes:

Dr Rachel Barnes, ophthalmologist
Dr Michael Denton, genetic researcher
Dr Joanne Dixon, medical geneticist
Dr Carolyn Hope, ophthalmologist
Dr Toni Marks, psychiatrist
Dr Marion Maw, genetic researcher
Mr Gordon Sanderson, optometrist
Dr Dianne Sharp, ophthalmologist
Dr Andrea Vincent, ophthalmologist/medical geneticist

Retina International assists collaboration between researchers from specialist areas such as biochemistry, cell biology, histopathology, molecular biology and genetics. Here in New Zealand, a research group at the University of Otago is searching for genes that cause inherited retinal degeneration. It is funded by diverse sources including the government (Health Research Council), community (Lottery Grants Board) and Retina societies (New Zealand, Australian and United States).

There remain considerable obstacles to overcome. However there is now real hope that causes will soon be understood and methods to prevent or treat MD devised in the future. A number of avenues look promising as treatments. In some cases proof of principle has been established in animal models. These experimental treatments will need to be shown to be feasible, safe and effective before they can be made available for clinical use.

These potential treatments include:

• Radiation therapy to stop the growth of new blood vessels and prevent further vision loss in wet AMD.
  
  
• Macular translocation surgery to detach the retina and relocate the macula away from blood vessel growth in wet AMD.
  
  
• Pharmaceutical agents.
  
  
• Survival factors: It may be possible to use natural substances that sustain nerve cells to keep injured photoreceptor cells alive.
  
  
• Retinal Cell Transplantation: It is not possible to transplant an entire eye. Two strategies have emerged: either healthy retinal pigment epithelium cells or healthy photoreceptors are introduced into the patient's retina. The aims are to slow degeneration of the retina and/or to restore vision.
  
  
• Gene Therapy: This approach is based on an obvious logic; if a gene is defective, replace or repair it. While this may sound simple, the practical details are very complex.

Retina New Zealand will keep you informed on research developments through its newsletter. The websites listed in the Further Information section also provide up-to-date reports.

Your questions answered

Is it common to experience emotional distress after macular degeneration is diagnosed?
Yes. After hearing for the first time that you have some form of retinal degeneration which may lead to severe visual impairment, it is not unusual to experience shock, fear and confusion. Some people accept the situation more easily than others. Some go through a temporary period of depression before they come to terms with the situation. In addition to frustration and depression, the feeling of being alone is apparent. However, you are not alone. Retina New Zealand, its branches and its members are there to support people affected with retinal degenerative conditions and their families, to pass on information and keep abreast of research developments. For information about our Peer Support network, see the back page of this booklet.

How will my family cope?
It is essential that all members of your family, and your friends, receive accurate information so that they can understand what is happening to you. Without this they may not come to terms with your situation and may not be able to give you the support you need. You should explain what your limitations are in a particular situation. A sense of humor on all sides certainly helps.

Does macular degeneration lead to blindness?
People commonly think of blindness as a complete loss of vision. People with MD retain peripheral vision and learn to optimise the use of their remaining central vision. However some will be classed as "legally blind".

What is legal blindness?
There are two standards of blindness in New Zealand. The Royal New Zealand Foundation for the Blind standard is visual acuity of 6/24 or less in the best corrected eye or a field of vision or less than twenty degrees. The work and Income New Zealand standard for a blindness benefit is visual acuity of 3/60 or a field of vision of less than five degrees.

Why can't I get glasses to help?
Glasses correct for an inability of the lens and cornea to focus light onto the retina ie short- or long-sightedness. Glasses do not alter the function of the retina itself, including the macula, and so do not help in MD. However if a person has both MD and an inability to focus, then glasses will allow the remaining retinal function to be fully used.

What about cataracts?
The lens of the eye is transparent when healthy; a clouding of this area is called a CATARACT and can obstruct the passage of light to the retina. Many people with MD also develop cataracts. The lens can be surgically removed and replaced with an implant but whether or not the vision will be improved, depends on the extent of the MD and the success of the cataract surgery. This should be discussed with an ophthalmologist.

Does light have an effect?
There is no scientific evidence to suggest that normal light levels affect or worsen the symptoms of retinal breakdown. It is advisable to protect the eyes from long exposure to bright light, particularly ultraviolet. Suitable sunglasses may be obtained from optometrists or the Royal New Zealand Foundation for the Blind. Otherwise you can use your sight without fear of damaging it by use.

What are floaters?
A clear jelly-like substance called VITREOUS FLUID fills the posterior chamber of the eyeball. Normally attached to the retina, it can become detached in clumps or strings, called "FLOATERS", which are usually harmless but can cast annoying shadows on the retina.

There are times when my vision seems better or worse. Does this happen to others?
There are a number of factors that might account for good days or bad days. Some people see better on cloudy or dull days. Others may not see as well when tired or under emotional strain. All people have days when they seem to function better or worse than on others.

Does loss of vision mean that I will become dependent?
You may need training to learn how to use your remaining vision more efficiently, or to use a white cane or guide dog. People with MD may benefit from education in the use of ECCENTRIC VIEWING, that is, the greater use of side or peripheral vision. There are a growing number of aids, both optical and electronic, which make life easier for those with visual problems. There are aids to help mobility, special lighting and equipment to help at work or in the home. Generally people affected with MD can manage almost as independently as anyone else can. There are also organisations such as the Royal New Zealand Foundation for the Blind that can help. The Retina New Zealand branch in your area can refer you to the resources available.

What about my career?
People with MD continue to lead very productive lives. There are examples of successful careers in law, management, education, social work, accounting, computing, tourism and other diverse occupations. After coming to terms with the disorder and finding the right aids, equipment and training, difficulties can be overcome. With perseverance a suitable occupation can be found.

Can I go on driving my car?

No, if your visual acuity is less than 6/12 in your best eye. Make a responsible decision and be guided by expert opinion. Do not wait until you have an accident. Your insurance will be invalid if you don't meet the criteria. You may be eligible for total mobility vouchers from the regional council.

Can things at home be improved?
Yes. A great deal can be done by careful use of lighting, colours, contrasts, textures, labelling, and so on. Train yourself and your family to be tidy and methodical. Special attention should be paid to safety in the home. There are lots of aids to help with cooking, gardening, and do-it-yourself projects. Information is available from the Royal New Zealand Foundation for the Blind whose staff include Techniques of Daily Living specialists and Retina New Zealand branches.

Will I have to give up sport and games?
Partially sighted and blind people participate in many sports and social activities. In fact, it is very important for all visually impaired people to make an effort to keep themselves fit and not to let their visual impairment become a reason for not fully participating.

Royal New Zealand Foundation for the Blind

More than 12000 New Zealanders are registered as members of the Foundation. Many of these people who lose their sight later in life, have some vision and require some type of rehabilitation service. The Foundation's rehabilitation services are designed to help those with a sight loss to obtain the skills they need to live independently in the community. The staff are specially trained and will provide services to members in their own home, at the local regional office or service centre.

The types of services offered are:

• Talking books or magazines from Library Services.
  
• Major daily newspapers read on the Telephone information Service.
  
• Counselling services.
• UV blocking sun glasses, magnifiers and other helpful equipment available from equipment services.
• Practical help in moving around your own community with Orientation and Mobility services.
• Useful tips on using household appliances safely, such as pouring hot drinks, available through Techniques of Daily Living Services.
• Help with finding employment through Vocational Services.
• Training in touch typing, use of Closed Circuit TV and computer equipment with Communication Services.
• Social contact with other members through the Foundation's Social Club.

For information about these and other Foundation services available in your region, ring Free phone 0800 24 33 33.

Further Information

This booklet is intended as an introductory guide to macular degeneration. If you would like to learn more about particular topics such as lifestyle adjustments, clinical management, research developments, and patient support groups, then the following books and internet addresses provide a good starting point.

Grunwald, Henry; Twilight: losing sight, gaining insight (New York, Alfred A. Knopf, 1999 – available soon through the talking book library at the Royal New Zealand Foundation for the Blind).

Mogk, Lylas and Marja Mogk; Macular degeneration: the complete guide to saving and maximising your sight (New York, Ballantine Books, 1999 – TB6668 in the RNZFB talking book library at the Royal New Zealand Foundation for the Blind).

Wason, Betty; Macular degeneration: living positively with vision loss (Alameda, Ca., Hunter House, 1998 – TB6659 in the talking book library at the Royal New Zealand Foundation for the Blind).

Macular Degeneration Support
www.mdsupport.org

Retina New Zealand
www.retina.org.nz

Retina International
www.retina-international.org

Royal New Zealand Foundation for the Blind
www.rnzfb.org.nz

US Foundation Fighting Blindness
www.blindness.org
 

Low Vision Clinics

Low vision clinics assess the level of visual function and prescribe aids to meet specific needs such as reading print, distance vision, computer screens etc. At the time of writing, there are low vision clinics in New Zealand sited in Auckland, Wanganui, Wellington, Christchurch and Dunedin. Additional clinics are proposed. In most centres the low vision clinic is attached to the eye department at the local hospital and they will arrange a referral for you. Referral can also be through your ophthalmologist, optometrist, GP, or the Royal New Zealand Foundation for the Blind.

Low vision aids are designed to enable people to make the most of the eyesight they have. A large number of people with AMD and similar disorders find they are able to read small print again or perform other visual tasks with the assistance of low vision aids. Each person is different with differing needs. Lenses, magnifiers, monoculars, closed-circuit televisions or other sophisticated electronic equipment may help.

Information on visual aids is also available through Retina New Zealand and the Royal New Zealand Foundation for the Blind. Some of the aids are expensive but loans or subsidies are available through the Royal New Zealand Foundation for the Blind once you have been registered with them as a member. They offer rehabilitation services as well as some aids and appliances.

NZ Visual and Sensory Resources Centres

Children with a visual impairment may require special services to enable them to function in a mainstreamed classroom. These services are provided through Visual and Sensory Resources Centres.

To find out the location of the nearest centre, contact your regional Royal New Zealand Foundation for the Blind or Special Education Service offices.

Retina New Zealand

Retina New Zealand is a self-help group that seeks to assist its members to cope with their visual problems.

Local branches hold gatherings to socialise, provide peer support, exchange information and learn from guest speakers.

Retina New Zealand publishes a regular quarterly newsletter (in print, tape, e-mail or disk) which keeps members informed about the latest aids, up-to-date research into RD and other interesting facts for those with visual problems.

Our society is a full member of Retina International, which enables us to exchange information and research news with other member countries, and to keep our members right up to date on the progress of research into RD.

New members of Retina New Zealand are welcome. To join our society, please fill out the form at the end of this booklet. Membership is open to any person diagnosed with a retinal degenerative condition, their families and/or persons who do not have retinal degeneration but who are interested in furthering the aims and objects of the society.

All branches need more members and assistance in maintaining member contact, public awareness, office administration and so on. We all have a role to play and there is strength in unity. Please contact the branch nearest to you to offer your help in our "Fight for Sight".

Retina New Zealand Offices
(check the National Office website for the most recent local branch and contact addresses)

National Office:
National Secretary
Retina New Zealand
PO Box 27-177
Wellington
Phone 04 380 2160
Fax 04 389 5254
E-mail retinanz@ihug.co.nz
Website: www.retina.org.nz

Auckland
Fraser Alexander
RNZFB
Private Bag 99941
Freephone 0800 243 3333
Email falexander@rnzfb.org.nz

Wellington
Pat Nicholson
10 Tremaine place
Camborne
Wellington
Phone 04 233 8140
Email pat.nicholson@xtra.co.nz

Christchurch
Kaye Newton
25 Bolton Avenue
Christchurch
Phone 03 379 5807
Email keakaye@ihug.co.nz

Dunedin
Helen Adams
2 Pollock Street
Maori Hill
Dunedin

Tel: 03 467 2278
Email: adams@es.co.nz

Acknowledgements

Retina New Zealand wishes to acknowledge the contributions of the following people who have made this publication possible:

• The Retina New Zealand publications committee comprising Helen Adams, Julie Dalloway, Lynn Keogh, and June Ombler in partnership with Dr Marion Maw.
  
  
• The Scientific and Medical Advisory Board of Retina new Zealand for advice on content, especially Dr Dianne Sharp and Mr Gordon Sanderson.
  
  
• The Foundation Fighting Blindness - both Canada and united States of America - for content and design ideas. The How does macular degeneration affect vision section is based, with permission, on material from the Retina International website that is subject to Retina Suisse copyright.

Publication of this booklet was generously funded by the Royal New Zealand Foundation for the Blind. The Foundation also provides support services that complement the programmes of Retina New Zealand. The Foundation has contracted with Retina New Zealand to provide peer support and public education programmes.

Help fight retinal degenerative disorders

There are many ways in which you can help Retina New Zealand to make a difference. Your membership of the society and/or involvement with gifts of time, energy, skills, enthusiasm, donations and bequests make a valuable contribution.

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