Winter Newsletter

August 2002, Number 14

EDITORIAL.

This issue finds the world a much sadder place as many thousands of innocent people have been or are being killed, merely because they have been in the wrong place at the wrong time. The terrible tragedy of the New York Towers' destruction and its aftermath is affecting everyone in some way. As Mahatma Gandhi said, "An eye for an eye makes the whole world blind". However, Retina International, of which New Zealand is a member, includes all countries, races and religions that choose to belong to it. It makes no distinction as to whom it will help when treatments are eventually devised for retinal degenerative diseases.

This issue comes out two weeks earlier than scheduled because we want all our members who have any form of Macular Degeneration to receive their free print copy of the society's latest publication "About Macular Degeneration" as soon as possible. Please keep your booklet to refer to when you need information about MD and have questions you want answered.

We have a guest Editor this time - Chris Inglis - invited by Tony Haas, our recently re-elected President, to replace his usual President's letter. Chris mentions the success of the "No Nonsense Eye Expo" in Auckland. The Otago/Southland Branch also had a most successful publicity campaign during World Retina Week. To launch the booklet "About Macular Degeneration" they had a 9 minute interview on Prime TV, an exhibition in the foyer of Dunedin Hospital to promote the society and its publications and an article about the MD booklet in the Otago Daily Times. Their co-ordinated campaign prompted many booklet sales and calls to their Dunedin Secretary ordering more and requesting information.

Summer is almost here and the sun's rays are most damaging to the eyes at this time of the year, so heed the article we print recommending that people like us should wear the right kind of protective sunglasses, and don't forget to wear a wide brimmed hat or peaked cap when going outdoors.

This is a bumper end-of-year issue, so read on to find out what we have of interest to you and things you need to know about. Best wishes for the holiday season ahead from the Executive Committee and myself.

June Ombler, Editor
207 Forbury Road,
St Clair, Dunedin.

Phone: 03 455 8813.
Email: jombler@xtra.co.nz

GUEST EDITORIAL
By Chris Inglis, Divisional Manager, RNZFB Blindness Awareness & Prevention

Working together - a partnership approach It is with pleasure that I write this guest editorial in the Spring Edition of the Retina New Zealand Newsletter. My editorial is intended to raise the issue of partnerships and collaborative activities between the Blindness Awareness and Prevention division (BAP) of the RNZFB and allied organisations, professional bodies and consumer organisations. BAP is tasked with raising the awareness in the community of avoidable blindness and the needs of sight impaired and blind people. BAP will also be developing and implementing sight loss prevention strategies where blindness is avoidable.

Recently BAP completed its strategic planning exercise. I am pleased to say that the plan has now been finalized and copies can be sought from BAP. In the plan we have developed 5 critical success factors, the first of which refers to our ability to develop partnerships with internal and external stakeholders. We have therefore developed some strategies to develop partnerships with groups like Retina New Zealand.

Already BAP has collaborated with Retina New Zealand on a major prevention of blindness initiative as part of World Retina Week. The Eye Expo - "No Nonsense Eye Sense" was held in Auckland in September and brought together agencies and businesses working in the area of sight loss/blindness (and related fields) to promote blindness prevention. The expo had 5 major themes including learning about eye conditions, early detection of eye problems, lifestyle and the eye, services available for people with vision loss/and seniors in general and the promotion of peer support services. This event was a first for New Zealand and was very well received. I believe we should congratulate each other on a very successful partnership in this instance.

There has been a call to repeat this event next year and to hold it also in other centers around New Zealand. BAP supports this proposition. While this is just one example of how we can work together it signals how, when we work together we can make an appreciable impact in raising awareness and hopefully preventing potential blindness. It is now time that we build on this collaborative success and work together to develop other joint initiatives. If we are to repeat and develop the Eye Expo - "No Nonsense Eye Sense" and develop other collaborative initiatives we must start working together now. One thing that we learnt from the eye expo is that planning well in advance is crucial if we are to secure funding, engage other participants and achieve the results we desire.

What I would like to suggest is that we meet together and explore the kinds of initiatives we could participate in together and establish priorities and individual roles including what organisation resources we can bring to any given initiative. It will be through this process that we will be able to work out exactly what we realistically can achieve and plan and set implementation timeframes for the priority initiatives we have identified. I hope to meet with Tony Haas soon to discuss how we can move forward including setting a future date for Retina New Zealand and BAP to meet to discuss future collaborative initiatives.

I wish you all well and extend on behalf of the team our seasons greetings to you and your families.

RESEARCH

CLINICAL TRIAL FINDS ANTIOXIDANTS AND ZINC BENEFICIAL IN REDUCING RISK OF SEVERE AGE-RELATED MACULAR DEGENERATION
From the U.S. Foundation Fighting Blindness, 12 October, 2001

Patients with advanced cases of dry age-related macular degeneration (AMD) can moderately lower the risk of developing the more severe wet form of the disease and preserve vision by taking a daily dose of antioxidant vitamins and zinc. This finding is the result of the Age-Related Eye Disease Study (AREDS), a randomized, placebo-controlled clinical trial funded by the National Eye Institute. AREDS evaluated over 3600 men and women between the ages of 55 and 80 for an average of 6.3 years. Published in the October issue of the Archives of Ophthalmology, AREDS also evaluated whether antioxidants and zinc might reduce cataract development but found no beneficial effect.

Dr Paul Sieving, Director of the National Eye Institute, stated, "Now that we know antioxidants and zinc are helpful in reducing the risk of severe disease, it is even more important for older-age Americans (and New Zealanders) to have regular eye exams. Intervening in at-risk individuals could help reduce severe disease and vision loss in millions of Americans."

Specifically, the AREDS study found that AMD patients with advanced cases of dry AMD or vision loss due to wet AMD in one eye, who took daily supplements containing vitamin C, vitamin E, beta carotene, and zinc, had a 20% chance of developing wet macular degeneration over a five-year period. By comparison, the control group taking a placebo pill lacking any nutrients had a 28% chance of developing wet macular degeneration over a five-year period. This finding is important because delaying the onset of wet AMD and its accompanying vision loss by several years can prolong the independence and mobility of seniors and preserve their quality of life.

What is Macular Degeneration?

Macular degeneration is so named because it causes the degeneration of the macula, the central portion of the retina that helps us perceive fine visual detail. Dry macular degeneration is first diagnosed by the appearance of fatty deposits called drusen in a layer of cells beneath the retina called the retinal pigment epithelium (RPE). As drusen deposits accumulate and become larger, they interfere with the function of photoreceptor cells in the macula, causing a gradual loss of central vision. In the later stages of dry AMD, drusen deposits can also cause the death of cells in the RPE, a condition called geographic atrophy.

Researchers have found that patients with extensive intermediate and large size drusen deposits are at a higher risk of developing the more severe wet form of AMD than patients with fewer or smaller drusen. In wet AMD, abnormal, leaky blood vessels grow beneath the retina, allowing plasma and blood to seep into the macula. Because wet AMD usually results in a rapid and devastating loss of central vision, researchers are searching for treatments that prevent or delay this form of the disease from developing. Antioxidants and zinc, in the doses administered in the AREDS study, provide the first therapy for patients with advanced cases of dry AMD, who are at increased risk of developing wet AMD.

Dosages

Vitamin companies are not yet manufacturing a supplement of antioxidants and zinc containing the dosages used in the AREDS study. Until such a formulation becomes available, patients can purchase each nutrient separately. The daily therapeutic dosages of each of the nutrients used in the AREDS study are as follows: vitamin C, 500 mg; vitamin E, 400 IU; beta carotene, 15 mg; and zinc, 80 mg.

Contraindications

Cancer prevention studies have found that high doses of beta carotene increase the risk of developing lung cancer in cigarette smokers. These studies strongly suggest that cigarette smokers, or those with smoking histories, should avoid taking beta carotene to prevent advanced macular degeneration.

The AREDS study findings are specific to patients with advanced cases of dry macular degeneration or vision loss from wet AMD in one eye. The study did not evaluate patients with early onset forms of macular degeneration such as Stargardt and Best disease. Due to the nature of the severe genetic defects that cause these early onset forms of macular degeneration, there is no evidence to support the use of high doses of antioxidants and zinc. There is also no evidence that antioxidants and zinc would offer benefit to patients with other retinal degenerative diseases such as retinitis pigmentosa. To the contrary, a well-designed clinical trial found that a daily dose of 400 IU of vitamin E resulted in a faster progression of vision loss for patients with common forms of retinitis pigmentosa.

RECOMMENDATION OF PROTECTIVE EYE WEAR FOR PATIENTS SUFFERING FROM DEGENERATIVE RETINAL DISEASES
CH.E. Reme, Laboratory of Retinal Cell Biology, University Eye Clinic, ZURICH, Switzerland.

On the basis of recent research data the scientific and medical advisory board of Retina International recommends UV - blocking and blue - reducing sunglasses for patients affected with retinal degenerations and dystrophies.

Apart from possible contrast enhancement and reduction of visual discomfort by minimizing glare, there are now medical indications for the use of protective sunglasses. The overall level of transmission of visible light in such glasses may vary according to the needs of the respective patients, however, UV blockade [i.e. at 400 nm] and a reduction of blue light transmission (i.e. up to 470 nm) is strongly encouraged in view of several scientific publications.

Scientific rationale

A growing number of animal models which mirror human retinal dystrophies and certain cases of human RP show an increased sensitivity to bright light exposure, which accelerates the death of visual cells. There is also increasing experimental evidence for light as a risk factor initiating or enhancing age-related macular degeneration. Conclusive experimental evidence reveals that short wavelength blue light has a distinct potential to damage and destroy visual cells.

Even though epidemiological studies regarding prevalence of AMD in relation to sunlight exposure are controversially discussed, recent evidence from a longitudinal, population based study indicates that extended exposure to sunlight in teenagers and young adults is associated with the development of early AMD in later years of life.

SEVENTH HELEN KELLER WORLD CONFERENCE 7TH-10TH OCTOBER, 2001
By Kaye Newton, Retina NZ Vice President and representative to the Conference

This was the first time it was held in the southern hemisphere and attracted the largest ever gathering of deafblind people anywhere in the world. There were over 300 attendees including interpreters and people with a professional interest. There was a large contingent of 80 people from Sweden, perhaps reflecting a country where taxes are high and presumably more services/funding is available from the government.

It was held at Waipuna Hotel near Mount Wellington, Auckland which proved to be an excellent conference venue, and care had been taken to mark steps and glass doors etc with brightly coloured sticky tape.

The conference was officially opened by Hon Ruth Dyson, Minister for Disability Issues. She was presented with gifts from Tanzania, including a necklace and earrings. She promised that she would get her ears pierced soon. However later that morning she was back with her ears pierced and wearing the earrings! Apparently the Human Rights Commissioner and the Commissioner for Children also attended the conference.

I shared a room with Pip Burrell, also from Christchurch, and her daughter Kate who are Retina NZ members. It was good to be able to discuss what we had learnt and listened to over the day - especially after we discovered the spa pools which no-one else seemed to know existed. I have since asked them what they took away from the conference. For Kate, a young deafblind adult, it was meeting so many role models and inspirational people. Pip has come away acutely aware of the huge need for a government funded quality professional interpreting service catering for the unique needs of deafblind people in New Zealand.

It was amazing to see all the various forms of communication used. Signing from different countries, various tactile forms, such as the manual alphabet, some using two hands, some just one in the palm, finger braille where someone types braille with their fingers on the back of the recipient's fingers. I learned that it depends on what form of communication a person has grown up with, what method they use. For example if a person loses their hearing later in life, then they have been used to talking and will continue to talk even though they may now need a different form of communication to receive information. Similarly, a person who has always been deaf and signs, will continue to sign even if they can no longer see it themselves.

The theme of the conference was Identity, Rights and Unity and this was reflected in many of the workshops. While there was a call for unity especially with the impending formation of the World Federation of the Deafblind (WFDb) following the conference, the huge diversity of people and means of communication were acknowledged and respected. The need for co-operation and sharing of information between organisations of different countries came up in several workshops.

One workshop I attended was information about cochlear implants taken by Dr Ronald Goodey an ear, nose, throat specialist from Auckland. I learnt that there are few cases of "nerve" deafness, though many of us will have been given this diagnosis in the past.

In most cases hearing loss during life is from the loss of the hairs in the inner ear. A hearing aid can be good if there are sufficient hairs left. Apparently cochlear implants are more beneficial for restoring hearing to people who have lost hearing than giving hearing to people who are congenitally deaf. If children are to use cochlear implants, then it is better if they get them at an early age when they would normally be acquiring language, and their brains are still developing. Reg talked about his implant which he received 50 years after losing his hearing. He had already lost his sight by accident as a child. His advice? Go for it, though it was apparent that it took a lot of hard work to get the full benefit of the surgery.

There were many inspirational speakers. The programme was packed so we finished about 6 pm each day, but with good breaks for interaction between sessions. The highlight for me was Satoshi Fukushima from Japan. He lost his sight at 9 and his hearing at 18 but went on to become the first deafblind person to go to university in Japan. After teaching for many years, he is now a professor at Tokyo University, and has been instrumental in getting Deafblind organisations established across Japan. His speech was that communication is a basic need, as important as food and water. Totally deafblind people need an interpreter/guide to convey to them what is happening in the environment, not just to translate thoughts to or from other people.

The resolutions articulated before closing the conference were a summing up of the themes that were dealt with over the previous two days. Here are some of them:

* Deafblindness is a unique disability with its own special needs.

* Each deafblind person is also a person and therefore is entitled to the same rights as any other citizen. We call on governments of every country to acknowledge our rights and take us into account when developing national health and social service programmes.

* Communication is one of our greatest problems because of our dual sensory loss. We can communicate using different methods of communication. Each method should be included in the curriculum of professionals dealing with education and rehabilitation.

* In many countries deafblindness is still unknown and services do not exist, or are insufficient. The plea is for governments to undertake provision of necessary services. This should include programmes to identify and diagnose so deafblind people can be detected. This is particularly important for congenitally deafblind children to avoid being regarded as mentally retarded.

* Early intervention services should be available for preschool children.

* Provision of a good interpreting service throughout countries is paramount, and there needs to be specialist training for professionals working in the field.

* In each country deafblind people form only small groups - thus unity above all our diversity is very important for the associations to move forward. By unity we will gain our goals."

The inaugural general assembly of the World Federation of the Deafblind was to follow on the Thursday and Friday, but unfortunately it was time for me to return home to work. Stig Ohlson of Sweden is the first President. There will be one representative from the Australasian region.

The success of the conference made me proud to be a New Zealander - though the grey Auckland weather wasn't anything to crow about (ok, ok so it was freezing in Christchurch too).

Jan and Graeme Scahill and their team from Deafblind New Zealand should be very satisfied with the success and positivity of the conference. Max Comer (a Retina NZ member) is the current NZ Deafblind president. He was in Wellington with his wife Jan just the week before, attending our Retina NZ national AGM. If there were any hitches, they were dealt with in the background. It was an enormous undertaking which took four years work, and I hope they can take a well-earned rest with big smiles on their faces.

HANDY HINT

Do you sometimes lock yourself out of your house? If so, here is the answer. The "Bolt Snap" which clips your keys to a belt, loop or handbag, is a tough spring snap lock similar to that used on a dog's leash. It keeps keys accessible. You can buy it at Mitre 10 Hardware stores or other hardware or pet shops.

It costs $5.50. Cheap at the price, as last time I locked myself out I had to pay $30 for a locksmith to open my front door! G.J.M.

POEM - COSMOS ON MY FINGERTIPS

When light and sound vanished from my life,
There ceased to be words,
And the world was no more.
Alone in the dark and silence
I sat motionless, wordless.
But when your fingers touched my fingertips,
Words emerged into being
Throwing light and invoking melodies lost.
When I communicated with you through my fingertips,
There arose a new cosmos,
And I discovered the world again.
Communication is my life.
My life is and will always be with words...
Words spun out from the cosmos on my fingertips.

By Satoshi Fukushima (Japan)
Written for the 7th Helen Keller World Conference.

ABOUT USHER SYNDROME

Usher syndrome is an inherited disorder characterized by moderate to profound hearing impairment, which is present at birth or shortly thereafter, and progressive vision loss due to retinitis pigmentosa (RP), a degeneration of the retina.

Clinical description

There are at least three different forms of Usher syndrome.

* Individuals with Usher syndrome Type I are born profoundly (completely) deaf and experience problems with balance. In adolescence, they usually begin to exhibit the first signs of RP
- night blindness and loss of peripheral vision.

* Individuals with Usher syndrome Type II do not have balance problems. Symptoms of RP develop later in adolescence.

* In 1995 researchers documented a third type of Usher syndrome known as Type III, which, like the vision loss due to RP - is progressive.

Hearing loss in Usher syndrome is due to a genetic defect in the sensory (nerve) cells in the cochlea, a structure within the inner ear that is necessary for transmission of sound to the brain. This same gene defect also adversely affects photoreceptor cells in the retina, leading to vision loss. The retina is a delicate tissue in the eye composed of multi-layered light sensing cells. Photoreceptor cells are responsible for converting light into electrical impulses that transfer messages to the brain - where "seeing" actually occurs.

Inheritance

Usher syndrome is passed to succeeding family generations through the autosomal recessive inheritance pattern. In this type of inheritance, two copies of an Usher syndrome gene, one from each parent, are required for a person to have the syndrome. An individual with only one copy of the gene is called a carrier and will have no symptoms of the disorder.

Approximately 30 percent of people with RP report some degree of hearing loss: about half of these cases are actually diagnosed as Usher syndrome. One to three percent of all cases of profound deafness is caused by Usher syndrome and it is the major cause of deafblindness.

Currently there is no way to halt the degeneration of the retina or to restore normal hearing. The hearing loss of Usher syndrome is due to an inner ear problem, which cannot be corrected with middle ear surgery. Some patients with severe hearing impairment have benefited from cochlear implants. Others with residual hearing may benefit from the use of hearing aids.

PEOPLE

MIRACLES DO SOMETIMES HAPPEN
Compiled by June Ombler

Two guide dog teams in the north tower of the New York World Trade Centre miraculously escaped before the 110 storey building collapsed in a pile of concrete and steel girders on that fateful day of September 11, 2001. Below is a precis of what happened to one of them.

Omar Eduardo Rivera, who worked on the 71st floor of the north tower felt the impact of the hijacked plane as it hit the building above him. "I stood up and could hear how pieces of glass were flying and falling. I could feel the smoke filling up my lungs and the heat was just unbearable", he said. "Not having any sight I knew I wouldn't be able to run down the stairs and through all the obstacles like other people. I was resigned to dying and decided to free Dorado (his guide dog) to give him a chance to escape".

"I thought I was lost for ever - the noise and the heat were terrifying - but I had to give Dorado a chance to escape. So I unclipped his lead, ruffled his head, gave him a nudge and ordered Dorado to go". "I hoped he would be able to quickly run down the stairs without me and get to safety. I thought he'd be so scared he'd run. Glass was shattering around my head and people were rushing past down the stairs".

Dorado was swept away by the rush of people fleeing down the stairs and Eduardo Rivera was on his own for a few minutes in the pandemonium until he felt a familiar fuzzy nudge on his leg. Explained Rivera, "Dorado returned to my side a few minutes later and guided me down the 70 flights into the street. It was amazing!. It was then I knew he loved me as much as I loved him. He was, prepared to die in the hope he might save my life".

Helped by holding a co-workers arm on his right and his guide dog on his left they negotiated the extremely crowded and confusing narrow stairwell in the terrifying descent. "Most people behaved quite prudently and grasped what was happening, so we walked down in an orderly fashion, but it was slow going because there were so many people struggling to get out, but Dorado kept nudging me down step by step".

It took more than an hour for them to descend the 70 flights of stairs and not long after they reached the ground and got to safety the tower collapsed. Said Eduardo Rivera, "I owe my life to Dorado - my companion and best friend".

SEVEN-GENERATION 'CURSE' A GENETIC DISORDER
By Kim Newth, with permission from the Sunday Star Times, 21 October, 2001

Auckland mother of twins Trish Lundon has a severe genetic eye disorder that has afflicted other members of her family for at least seven generations. Her boys Dylan and Jay inherited the condition. She has a brother who is virtually blind and a nephew who is totally blind. Her sister Lyn Nathan carries the same damaged gene and three of her five children are affected, including her seven-month-old daughter Jazmin.

The severe form of retinal damage is so common in the family that Lundon recalls her mother meticulously checking each new grandchild for it. "She would sit them down at four or five months in a darkened room and light a match and see if their eyes followed the light", she said. The traditional explanation for the disorder was that a curse was put on the family generations ago as a result of an ancestor's long forgotten misdemeanour. But now science is providing hope of eventually being able to lift the "curse", or at least isolate its biological cause.

For the past three years, a team of researchers at Otago University has been searching for the damaged gene they believe responsible, with a view to eventually treating the disorder. A breakthrough may still be decades away, but the family is taking the long-term view. "Its too late for us, but hopefully somewhere along the line - maybe for our kids or for their kids - there will be a cure", said Nathan. About 40 members of the extended family are affected by the damaged gene, with many of them requiring help from the Royal NZ Foundation for the Blind.

Those carrying it have a 50% chance of passing it on. The family's boys tend to be more badly affected than the girls: they are often born with virtually no sight and also significant intellectual disability. As well as being almost blind, neither of Lundon's autistic nine-year-old twins are able to talk and both are still in nappies. Nathan's two youngest boys, aged nine and seven, escaped intellectual impairment, but have a severe form of the retinal disorder. Trying to secure resourcing for their education in the primary school system has proved an ongoing headache.

Family members taking part in the Otago project have given blood samples, which enable researchers to search for a piece of chromosome - like a genetic barcode - shared by all of those with the disorder. The next stage is to look for genes associated with the retina. Otago research fellow Dr Marion Maw is pleased with progress and is "reasonably confident." A pregnancy screening test will eventually be developed showing whether a foetus had the damaged gene. Lundon said having such a test would help give families time to prepare for their child possibly having the disorder and to make informed decisions.

Long-term research goals are to develop treatments and to explore possible spin-offs for other retinal disorders, or even autism. "It may well be that this extended family is the only one in the world with exactly that condition," said Maw. "But there may be families with something quite similar, perhaps damage to the same gene but in a different way. Even though it's a rare disorder, we may also learn something new about how the eye works that is important for normal vision in everybody. It's a long stretch but we might be able to get some insights into more common visual disorders ....In addition, we may learn something new about brain function."

The project was also contributing to the development of a Maori biomedical research workforce. Masters student Ariana Hemara-Wahanui recently completed her work on the project and the team is currently looking for another Maori research student.

In Lundon's case, the disorder means she cannot drive, finds it hard to read small print, and requires a notetaker to assist while studying for a degree at the Auckland College of Education. "It was natural for family to hope for an eventual cure from the Otago research", she said. "However, even if that was not the result, it had been worth getting involved. In the past, family had been reluctant to talk about the disorder, but now people were being more upfront about it and accepting it was a problem. At the same time, no one saw themselves as being a victim. The family had come to terms with the fact it was part of life."

EDITOR'S NOTE: Auckland ophthalmologist Dr Carolyn Hope and Otago molecular geneticist Dr Marion Maw are working in partnership with members of this large whanau affected by this severe and unusual retinal disorder.

NEWS BRIEFS:

RETINA MEMBER APPOINTED TO DISTRICT HEALTH BOARD COMMITTEE:

June Ombler, Past President and current Editor of the Retina NZ newsletter was appointed to the Aged Care Consultative Sub-Committee of the Otago District Health Board in October.

"FUTURE INDICATIVE" INTERVIEW ON NATIONAL RADIO:

Retina President Tony Haas is to be interviewed on National Radio by Mike Gourley on the disability programme "Future Indicative". The interview will be on International Human Rights Day, Sunday December 9th at 7.05 pm after the news. Please mark the date and time in your diary to remind you to listen.

Tony hopes to promote our new "About Macular Degeneration" booklet, our Peer Support service and website, the benefits of blindness prevention and co-operation across the disability sector with regard to the NZ Disability Strategy, amongst other things.

LATEST RETINA NZ PUBLICATION ENCLOSED WITH THIS NEWSLETTER

All those members who have any form of Inherited or Age-related Macular Degeneration should have received a print copy of the new booklet "About Macular Degeneration - a New Zealand Guide to Macular Degeneration" in the envelope containing this newsletter. The booklet was published for release on World Retina Day, 29th September this year by Retina New Zealand.

We know your retinal condition by what you filled in on the back page of the member application/renewal form. However, if you did not fill in this section you will not have received this booklet.

If you have any type of macular degeneration and did not receive a copy of "About Macular Degeneration", please contact National Secretary Janet Palmer to order one:
phone (04) 476 7329 (leave a message on answerphone),
fax (04) 389 5254,
email retinanz@ihug.co.nz
or postal address
P.O. Box 27-177, Wellington.

Send her your name and postal address, and the type of macular degeneration you have, e.g. fundus flavimaculatus, Stargardt of age-related, etc.

All members with Macular Degeneration, who receive the newsletter on tape or by email, are being posted separately, a print copy of the booklet "About Macular Degeneration" to keep or to give to a family member or friend.

NEW TALKING BOOKS NOW AVAILABLE FROM THE ROYAL NZ FOUNDATION FOR THE BLIND TALKING BOOK LIBRARY

The Royal NZ Foundation for the Blind Talking Book Library has now recorded the two following booklets which are available for Foundation members to order on tape:

1. "A Family Affair - A New Zealand Guide to Inherited Retinal Degenerations". Published in Wellington in September 2000 for Retina New Zealand Inc. Narrated by Rosemary Ronald.

Functions and inherited dysfunctions of the retina are described in this booklet. At the end of the booklet there are helpful New Zealand contacts for people concerned about inherited retinal conditions. Book number TBHA239.

2. About Macular Degeneration - a New Zealand Guide to Macular Degeneration. Published in Dunedin by University Press for Retina New Zealand Inc. in September 2001. Narrated by Rosemary Ronald.

This booklet addresses the most commonly asked questions about macular degeneration, including: how does the retina work?; how does macular degeneration affect vision?; how can early signs of macular degeneration be detected?; what are the types of macular degeneration?; what treatments are available?; are genetic and lifestyle factors important?; and research into causes, treatment and prevention of macular degeneration. Book number TBHA241.

LETTERS

FROM: Stan Berman Washington, U.S.A.

Symptoms of Cataracts
One symptom of a cataract is a hazy halo around a light source.

To check this out, go out at night and look at a street light to see if its light seems to have a halo around it or if it is pretty clear or distinct. Cataracts will diffuse the light so you get this halo effect.

FROM: Elizabeth East Raumati South

I am writing to congratulate the members of the Publications Committee based in Otago on producing an excellent booklet About Macular Degeneration, which was launched at our AGM in Wellington on 29 September.

This 33 page booklet is easy to read as it has been produced in large print. It uses ordinary language or gives simple explanations for the medical terms used. The three photographs on page 10 and 11 show what it is like for someone with a macular problem. These photographs will be useful to share, when a person diagnosed with a macular problem is discussing the visual problems they encounter, with their family or friends. The booklet gives a good outline about treatments available, provides reassurance in its Question and Answer section and has an excellent section providing further Information. The addition of the Amsler grid printed on card at the back of the booklet is an innovative idea, which hopefully will allow members and their families and friends to monitor their eye conditions.

I understand that the booklet will be distributed to members of Retina NZ Inc. shortly. I urge them to read it and suggest that they get additional copies to give to members of their families.

CHRISTCHURCH BRANCH NEWS
From Kaye Newton

There was a good turnout of members to our spring meeting where Mike Prisk, a guide dog instructor was our guest speaker. He talked about the stages a puppy has to get through to become a qualified guide dog. He brought along Tiger who is still in training before he can be matched up with a new owner. Although the prerequisites for Mike's job would be ability to relate to and patience with both dogs and people, he proved to be an excellent speaker with lots of humour as well as information.

Our end of year break up is to be a BBQ at the Foundation for the Blind, Bristol St on Saturday 24th November at 5.30 pm. Please mark your diaries and more details will be mailed out to Christchurch members soon. If you are a new member and haven't been to a meeting yet, we would love to meet you.

TAPE OF THE SPEAKERS AT OUR AGM IN WELLINGTON NOW AVAILABLE

A very clear tape of the two speakers at the afternoon scientific session of the Retina NZ Annual General Meeting on World Retina Day, 29th September is now available for members to borrow. If you would like to hear it, please contact our National Secretary, Janet Palmer by phoning her on (04) 476 7329 (leave message on answerphone), fax (04) 389 5254 or by email retinanz@ihug.co.nz or alternatively, get in touch with your Branch Chairperson or Secretary to request it.

The two speakers recorded at the afternoon scientific session are John Forman, Executive Director of the NZ Organisation of Rare Diseases and Dr Marion Maw, Chair of the Retina NZ Scientific & Medical Advisory Board. Each addressed the subject of Genetics from different perspectives and answered questions afterwards.

DO YOU NEED HELP OR ADVICE?

The Retina NZ Peer Support Scheme is a free and confidential service, operating nationwide. To make contact, telephone 0800 243 33 33, press 1 for General enquiries and then ask the call centre operator to put you in touch with a Peer Supporter in your area.

Ring any of the following freephone numbers if you want to speak to a geneticist or genetic counsellor about your own particular diagnosis of RP, Macular Degeneration or other retinal degenerative disorders.

Auckland Genetic Hotline
(Ask for Dr Julie McGaughran) 0800 476 123
Wellington Genetic Hotline 0508 364 436
Christchurch Genetic Hotline 0508 364 436
(South Island callers ask for Dr Caroline Lintott)

Janet Palmer,
National Secretary,
P.O. Box 27-177,
Wellington
Phone: (04) 380 2160
Fax: (04) 389 5254.
Email: retinanz@ihug.co.nz
Website address: www.retina.org.nz

CLOSING DATE FOR RECEIPT OF ARTICLES FOR THE NEXT ISSUE IS FRIDAY 8 FEBRUARY 2002.