Retina New Zealand Inc

Spring Newsletter No. 27, November 2005.

In this Issue:

1 Editorial

2 From the Retina NZ President's Desk

3 Letter to the Editor

4 Guide dogs from assessment to graduation

5 Learning to love my IOL'S

6 Coping – Foods for Eye Health

7 Research – The Science and Marketing of Dietary Supplements

8 S.A. and G.J. Ombler Charitable Trust

9 Retina NZ AGM and Conference

10 Snippets

11 Branch News

1 From the Editor

Disabled people in New Zealand have won a major victory with the publication of 'The Accessible Journey', the report of the Human Rights Commission inquiry into public transport in New Zealand. Many of the recommendations and requirements of the inquiry are to be implemented by 2010 when a review of progress will take place. The two submissions put in on behalf of Retina NZ have been incorporated into the report which is very exciting.

Last month I attended the 60th ABC Conference in Auckland on behalf of Retina NZ. Vice President Clive Lansink gave a very interesting paper on accessibility showing how technology has begun to marginalise blind and visually impaired people lately. Computers and stereos are often too difficult to use, and many household appliances are now electronic with a variety of beeps, buttons and coloured lights which are difficult to comprehend. Clive's paper was discussed by the other speakers including Roslyn Noonan of the Human Rights Commission. She stated that disabled people remain amongst the most disadvantaged of New Zealand's citizens.

This newsletter contains the promised article on training guide dogs, a member of our executive, Denise Keay, has written about her experience with intraocular lenses, and we have a new section called 'Snippets'. The research section examines a paper on the dangers of dietary supplementation.

I am now in my new home, almost unpacked, but still have a few of those 'what shall I do with these' boxes in a wardrobe. With the help of an interior design student I have chosen curtains, placed furniture in rooms, and co-ordinated colours. Many hours were spent digging a new garden, the neighbours were very concerned about my crooked lines so very kindly came and helped me! I have planted roses, camellias, lavenders, plus lots of flowering annuals in my garden. I have a vegetable garden which is already providing salads and herbs, and I look forward to extending and expanding it next year. Chocolat loves the freedom of a fenced section, lawn, and having a big park through the gate.

I have been the editor of the newsletter for 12 months and we are about to make some changes to the way the newsletter is produced and printed. I would love some feedback on the newsletter and suggestions of what I could include in the future. My phone number is 07 8533 612, my email is editor@retina.org.nz and my mailing address is 108B Comries Rd, Hamilton.

Susan Mellsopp

2 From the President's Desk

We had a successful one day conference in Auckland in August. Someone timed our AGM at 17 minutes, which obviously excluded the roll call. That gave us time to open the floor for any comments on what Retina NZ could be doing. The speakers were excellent. One Aucklander said to me they wished we had the conference in Auckland every year because they enjoyed it so much. The executive remains the same as last year. However, we are looking for a person with financial and reporting skills to join us. We are always keen to have people offer themselves to get involved at a local level so that members can meet others in their area.

Retina NZ is an organisation of people who care. It doesn't have a home, an office, or a building. Each person brings different skills and networks with them to the organisation.

Retina NZ is a network of people sharing knowledge, so our focus needs to be how to find, manage, and share that knowledge. It also crosses boundaries and involves collaboration with other organisations. Our SMAB, Scientific and Medical Advisory Board, provide us with professional expertise to ensure the integrity of what we disseminate. There is a flood of information available out there but it needs to be managed and made into chunks that are useful to our members. This means it needs to be relevant and understandable.

We were pleased to publish our pamphlet (thanks to Kaye Clark) about detached retinas in time for Retina week (19 ‑ 25 September). The key message is to recognise the symptoms of a detached retina and seek eye specialist advice immediately. If you would like a copy of this pamphlet please contact our National Secretary, Janet, at secretary@retina.org.nz or 04 476 7329. There should be no need to go blind from detached retinas.

Our telephone peer support line continues to receive more callers. I would like to acknowledge Petronella Spicer's contribution in manning the line voluntarily along with Elizabeth East. We have recruited some people to become telephone peer supporters for the Auckland region. Further training will be held soon before they become part of the team.

The executive for the next year is: Janet Palmer‑National Secretary, Camille Guy‑Vice President, Kaye Clark‑policy secretary, Denise Keay‑Wellington branch representative, Lynn Keogh‑Dunedin representative, Elizabeth East‑National Peer support co‑ordinator, Fraser Alexander‑International delegate, and myself as President and representing Christchurch branch. Dr Marion Maw continues to chair the Scientific and Medical Advisory Board. If you wish to contact any of these people, please contact Janet Palmer or the 0800 233 833 peer support line to get their contact details.

As always we welcome feedback.

Kaye Newton 03 3795 807

president@retina.org.nz

3 Letter to the Editor

Dear Editor

I would like to draw attention to the fact that there is now a mobile phone on the market designed for the more mature user that has a larger screen than normal with good text definition. It comes with a very easy to follow instruction manual.

It is the Vodafone Simply. One of the other good features of this model is that one can add contact names and numbers using a computer keyboard and screen. The phone has a USB cable allowing it to be connected to a computer. This makes it simple to add people to one's list of contacts as you can cut and paste addresses already in a Word document or the Outlook Express address book.

I am aware that one of our Wellington members recently bought one of these phones. She had previously not used a cell phone as she could not read their screen easily. She has had no trouble reading the screen of the Vodafone Simply. However, as everyone's eye condition is slightly different I would suggest people check whether they can read the screen before making their purchase.

Sue Emirali - Plimmerton

4 Guide Dogs - From Assessment to Graduation

By Mimi Hooper

Introduction:

It all sounds so easy ‑ assess and train a dog. It certainly isn't mystical but it does require hard work in all weathers, reams of patience and understanding, as well as firm, fair handling laced with love. I should also state very clearly that it requires our dedicated puppy walkers to have done a lot of the hard work for us ‑ toilet training, teething (and such sharp teeth too), yapping at all hours of the night and day.

A New Phase:

As a trainer our job starts once the "puppies" reach approximately 12 months (it can be anywhere between 10 ‑ 18 months). They leave their Puppy Walking families and come to the Royal New Zealand Foundation of the Blind, Guide Dog Services (GDS) Centre in Auckland to commence their assessment and training.

These new canine pupils are normally brought in by their families and are handed directly to their trainer. This gives the families a chance to meet the trainer, get to know them a bit, and discuss what is happening over the next six months to their well loved four footed family member. It also allows the trainer to get to know more about the puppy's home behaviour, puppy walking history and general upbringing. The puppy walker then gets a chance to say good bye, which can be a very emotional and difficult time ‑ especially for first time puppy walkers.

The pup is bathed and mixed carefully with his/her new kennel mates and left in the capable hands of the kennel staff until assessment and training starts with the guide dog trainer.

Assessment:

All dogs go through an initial assessment to evaluate their temperament and physical nature. Some of the physical may have already been done in the form of hip and elbow xrays when they were neutered. This will give the team at GDS an idea of their bone structure and confirmation.

Eye checks by a Canine Ophthalmologist specialist are done on all dogs at 6 weeks and then again once they reach 12 months to ensure there are no problems brewing in this area. The dogs' vet books and past kennel forms are checked, along with the GDS extensive health database, so all health history can be registered on the assessment form.

The temperament assessment consists of observing the dogs on a long lead, with minimal handler input, in approximately 15 different environments (i.e. rural, city, residential, night walk, shopping mall, train station home etc.) undertaking numerous different tasks (trains, buses, open stairs, escalators, cafe etc.).

During this time the Trainer observes the dogs' behaviour/reactions to all environments/tasks, noting the dogs' sensitivities, coping skills, willingness, initiative, and whether they shows any anxiety, suspicions, or aggressive tendencies.

At the end of the assessment, and sometimes during this period, a decision is made on whether to continue to the training stage or not. There are very rarely surprises at this stage as the dogs are monitored throughout their puppyhood and are in fact constantly under assessment.

The puppy walkers are contacted by phone and letter to let them know how the dog has progressed through the initial assessment, and the outcome and the trainers' findings are recorded. They are then contacted on a monthly basis with a phone call to update them on their pooches' progress.

Training:

With assessment completed, training starts. Now the trainers have an idea of the dogs' physical and temperamental make up they can tailor make each training program to the needs of the individual.

The doggy pupils are taught (at their preferred rate of learning) to guide in a central pavement position, moving from kerb to kerb following the shape of the road. We call this "the straight line" ‑ perfectly straight it is not, but it is straight in a not so symmetrical world!!!!! This is fundamental to the guiding of the dogs future partner. It allows the person to keep themselves orientated, and by adopting the position in the centre of the pavement it allows the dog to move left and right to avoid obstacles.

Another task the dog has to learn is obstacle avoidance, both moving (pedestrians) and stationary (anything on the pavement that is not moving!!!). They have to negotiate their way out into the road and back if the pavement is totally blocked (i.e. road works), and they have to learn to stop at kerbs.

On top of this the dogs have to curb their instincts ‑ not sniff, toilet, say hello to other canine mates or people and certainly not to pick up any food. They have to negotiate steps, lifts, shops and some times even escalators. They have to learn how to conduct themselves at home, socially, in trains, buses and how to locate destinations, counters in shops, chairs etc.

Once the canine pupils have got their paws around the basic training concepts, the responsibility of guiding and using all their newly learnt skills to problem solve whilst on the move are slowly passed over from the handler to the learner guide dog. One of the best ways to do this is by the trainer wearing a blindfold. This also allows the trainer to assess where the dog is at in its training and understanding.

Once the trainer considers their pupil to be ready ‑ they are qualified and presented for matching, much in the same way as a university student qualifies and starts the process of job hunting.

Matching:

Twice a year batches of qualified (and almost qualified) dogs are presented at matching meetings. Regional guide dog instructors from around New Zealand, and all the dog trainers, attend the matching meeting. The dogs are presented by their trainers both on video and "in the flesh" ‑ all dogs are viewed over two walks. Videos and verbal summaries of members are also presented by the instructors. All precautions are taken by providing accurate information of dogs and members to ensure that the risk of a mismatch is minimal.

Two of the most important considerations when matching are the physical size of the dog and walking speed. Many other factors are also considered including the working and social environment that the dog would be in, as well as the temperament of the dog and general personality of the client.

Matching also happens between these meetings with dogs that may have come into training later and are therefore not ready at one of the pre‑scheduled matching meetings, or a dog that may be a great guide but just took a bit longer to grasp all the concepts or mature. Once a match is made, and the member has accepted the dog offered, the team training begins.

The Team:

Usually the member and their new dog are teamed up prior to the commencement of training. This is called pre‑allocation and is done in order for the new members of the team to become acquainted and begin the bonding process. Bonding is an essential ingredient in a guide dog team as it consists of respect, trust and "love".

Teams can be trained from home, this is called a Domiciliary, or in a group situation which is called residential or Class. In some residential programmes the students gather on a daily basis, going home at night ‑ this is called centre based training; whilst others live in for the duration of the residential programme.

During this training period the member is taught how to communicate with their dog through the same body positioning and verbal commands that the trainer used. This increases the dog's understanding of their new partner and therefore lowers their anxiety levels.

They are taught how to work through all aspects of guide dog mobility in order to make a safe and tidy guide dog team.

In the case of the residential programme, the team will return home after training with a guide dog instructor who will help them settle into their new working environment, withdrawing support at a rate that leaves the member feeling comfortable in their independence.

Post Training Follow‑up:

Once the team has graduated, they generally work independently, but post training follow‑up visits are scheduled just to make sure things are going okay. These are scheduled for one month, three months, six months and twelve months after graduating ‑ or more frequently if needed or requested. After that initial year the follow up visits occur annually. The Team is now functioning independently.

5 Learning to Love my IOLS (Intra-ocular lenses)

by Denise Keay

Like most people who read this newsletter I have shonky retinas. Mine come courtesy of very high myopia and retinal detachments in both eyes. The first detachment in 1979 was in my right eye; A few years later I had one in the left. Surgery plus post‑operative complications left me without central vision in that eye and permanent double vision. After experimenting with contact lenses of different strengths I worked out the best way to manage both double vision and reliance on my right eye for near work. I needed to keep my right eye slightly short‑sighted and boost its distance vision with prescription lens sunnies when necessary. For a number of years I functioned happily with corrected vision of 1/60 in the left eye, and just below 6/12 in the right.

In 2000 I noticed the vision in my right eye was deteriorating. Movies looked blurry, and around town I was having more trouble than usual with steps and uneven bits of footpath. "You've got the beginnings of cataracts", said an ophthalmologist at the hospital eye clinic, "but you won't notice for a while." (Oh, really?) Given my dependence on my right eye ‑ which had a second retinal detachment in the early 90's ‑ and the risk of more detachments from surgery, I was in no hurry for a lens replacement. A couple of years later things were grim. I lived in a bubble with a steadily reducing radius of about 3 metres. Beyond that everything was fog. What little night vision I had went, and in town by day I started "recognising" people, except that the people I "recognised" couldn't possibly have been there.

Although still anxious about the surgical risks, I put my name down on the waiting list. I was high priority but the expected wait of 6 months came and went. By then I was having trouble seeing my keyboard at work. The clincher was a close squeak crossing a busy intersection and this time it was my fault, not the motorist's. I didn't see a grey car on a grey road on a grey day.

I decided to get the surgery done privately at a cost of around $3000 per eye. Since I was paying I was picky. I asked to be made short‑sighted in the right eye by two dioptres. The ophthalmologist suggested one‑and‑a half (which would have turned out to be perfect), then one, but I finished up with full correction in that eye. Being at home after the operation was a revelation, I was dismayed by the number of cobwebs on the ceiling. I wandered round peering out windows at bits of scenery I hadn't known were there. That night I couldn't sleep. Apart from the disconcerting experience of being in bed and able to see without contacts in, the room seemed uncannily light. It was as if my eye was permanently open. The next day I went to the movies, sat in the back row (something I'd never done before), and still felt too close to the screen. When I walked through town I read number plates, signs on buildings, signs on vans. All that "visual noise" was exhausting, but colours were brilliant. Not long before the operation I had helped a friend choose a colour scheme for her house, that now had a real wow factor.

So was my new IOL a miracle cure for very high myopia as well as the cataract?

The answer is a qualified yes because it's taken a lot of getting used to. After living in a bubble with a steadily reducing radius, the IOL catapulted me into a world where most things within 3 metres were a blur, and those within arms' reach nigh on invisible. I could watch TV from the kitchen (open plan house) but not while sitting in the lounge. Standing on a table to swipe at the ceiling's cobwebs didn't work, once near I couldn't see them. There didn't seem to be anything I could do at home without reading glasses or new contacts, so the day after surgery I went back to work. I still couldn't see the keyboard, and could only read the computer screen by holding a magnifying glass in front of it. On the other hand, the view from our high‑rise office was entertaining. I told my normal‑sighted colleagues that a pink house way up on top of the hill, whose existence I'd previously been unaware of, had brown aluminium window frames. They weren't convinced, but I was.

At my check‑up the ophthalmologist was thrilled, 6/6 vision! I muttered what could someone who hadn't had 6/6 vision in 50 years be expected to do with it, and hoped he felt deflated. He gave me a pair of hobby specs to use until my eye (and brain) settled down enough for proper correction. Although I started wearing a contact lens in the right eye to shorten my sight again, most of the adjustments took months rather than weeks and there were moments when I could have screamed with frustration.

The IOL in my left eye had less startling results and I am back to experimenting with different strength contacts. With a contact lens to give full correction to the left eye it's visual acuity is around 1/45. The contact lens for the right eye reduces it's visual acuity to 6/9, giving me useful near vision and perfectly adequate distance vision. If the right eye had got the IOL in the left, and the left eye had got the IOL in the right, life would have been simpler.

So, with the benefit of hindsight, are there are some things I'd have done differently?

I would have been less apprehensive about the risk of more retinal detachments. Someone with fragile retinas is at higher than average risk, but the level of risk is still low while the benefits are huge. If I'd known I was going to pay for the surgery, I'd have had it as soon as the cataracts were diagnosed.

I would have been more assertive about the need to be short‑sighted in my right eye. I don't expect an ophthalmologist to get the degree of correction spot on, but I would much rather have finished up more short‑sighted than I expected than have full correction. To anybody used to needing more than 15 dioptres of correction a reduction to 2 or even 3 would seem remarkable.

There is no denying the IOL's are a major improvement. There are the obvious safety factors: vastly improved night vision, and far less risk crossing roads or negotiating uneven steps and bad footpaths by day. I no longer see the world through a black lace curtain of floaters. It's worth noting that just as contact lenses give better correction than glasses, and hard contacts better than soft, IOL's give the best correction of all.

6 Coping - Foods for Eye Health

Recent studies on nutrients and eye health have indicated the importance of diet for eye health. Ensuring your diet has plenty of vitamins, minerals and antioxidants is very important. Eat few saturated fats and vegetable oils. Include foods with Vitamin C and E, carotenoids, zinc, and omega‑fatty acids.

The easiest way to start eating for eye health is to follow the 5‑plus rule for fruits and vegetables. Go for colour.

1. Leafy dark greens like silver beet, spinach, puha and dark salad greens.

2. Berries of all kinds: black, blue and red.

3. Orange, yellow and red vegetables: pumpkin, carrots, sweet corn and kumera.

4. Orange, yellow and red fruits: citrus fruits, apricots, persimmon, papaya, plums, rock melon, watermelon and tomato which is technically a fruit.

5. Cruciferous vegetables: broccoli, cabbage, bok choy and brussel sprouts.

6. Fish, particularly shellfish, and 'fatty' fish like tuna, salmon and sardines‑fresh or canned.

7. Nuts, raw or dry‑roasted‑walnuts, brazils, almonds and pine‑nuts.

8. Beans

9. Lean meats

10. Olive oil‑to make dressings and for cooking.

This information was provided by the New Zealand Association of Optometrists Inc

Research

7 The Science and Marketing of Dietary Supplements

Editorial: Frederick W. Fraunfelder MD

American Journal of Ophthalmology. 140, 2005: 302‑304

Dietary supplements are estimated to be a $60 billion industry worldwide. Only half of those who take supplements report using them to their Doctor. There is strong evidence that many herbal preparations have pharmacologic effects, and severe adverse reactions can occur. This is highlighted by the Food and Drug Administration ban on supplements containing ephedrine alkaloids such as ephedra. Touted as a potential stimulant and weight‑loss agent, this substance was banned after being linked with adverse cardiovascular and neurologic effects and, in some cases, death.

Examples abound of prescription drug interactions with many dietary supplements. These include ginkgo biloba, which, when combined with aspirin or Coumadin, can increase bleeding time and has also been associated with retinal hemorrhage. Licorice interacts with diuretics and cardiac glycosides, and can lead to dangerously low potassium levels and digitalis toxicity. Echinacea decreases the efficacy of immunologic drugs such as cyclosporine.

Identification and awareness of adverse events associated with herbal supplement use is limited by the voluntary nature of post‑marketing surveillance for dietary supplements. It falls to consumers to report adverse reactions and, without knowledge of these products' potential effects, their association with many reactions may go unrecognised.

Systemic adverse events are often not recognised until much later. In the United States the Food, Drug and Cosmetic Act permits the FDA to stop the marketing of products that make unsubstantiated "drug" claims, and to remove from the market products that cause dangerous adverse reactions. The FDA must prove that a supplement is dangerous before it can be removed from the market. Surveillance of nutritional supplements thus becomes critical, because safety information is often absent. Also, there is no assurance that products actually contain the ingredients listed on their labels (for example 50% of ginseng products contain no ginseng).

Currently, labelling on dietary supplements may list structure or function claims such as herb A promotes healthy eyes, but not herb A treats glaucoma. Because of this lax marketing restriction misleading claims appear in print and on the internet. A study published in the Journal of the American Medical Association reviewed 443 websites advertising dietary supplements. It noted that 55% of retailers made illegal claims about treatment, prevention, diagnosis, and cure of specific diseases through self treatment with herbal medicines and nutritional supplements.

Ophthalmologists are usually the first to witness adverse effects because many dietary supplements can cause ocular side effects. Some of the most significant adverse effects occur with Echinacea (irritative conjunctivitis), chamomile (allergic conjunctivitis), ginkgo biloba (hyphema, retinal haemorrhage, retrobulbar haemorrhage), licorice (blurred vision, migraine‑associated visual scotomas), niacin (cystoid macular edema in dosing >3.5g daily, blurred vision), Vitamin A (pseudotumor cerebri, in large doses), datura (mydriasis), and canthaxanthine (crystalline retinopathy, electro‑retinogram abnormalities).

Dietary supplements may ultimately be proven beneficial in the right dosage, and many ophthalmologists may need to learn how they can be used. Flax seed oil, primrose oil and fish oil show promise in the treatment of dry eye syndrome. Anti‑oxidant vitamins may have a role in the late‑stage treatment of age‑related macular degeneration. Anthocyanosides (bilberry) has been suggested as having positive effects on night vision. N‑acetylcarnosine eye drops are a leading seller worldwide because of the belief that they prevent cataracts. Unfortunately very few controlled clinical trials have studied dietary supplements so the observed side effects are subjective and clinicians lack information on dosing, efficacy, safety, and drug interactions.

The natural product industry argues that most dietary supplements are safe, especially when taken in proper doses. They also argue prescription drugs do much more harm because significant morbidity and mortality are rare from dietary supplements. While these statements may have some validity, key data is still lacking on these products' safety, proper dosage, manufacturing, common side effects, drug interactions, risks in pregnant women, effects on systemic diseases, pharmacokinetics and more. Controlled clinical trials could provide answers. A strong argument can be made that many dietary supplements should be regulated in the same way as prescription medications.

World Health Organisation guidelines provide some information on the cultivation, collection, classification, quality control, storage, labelling, distribution and post‑marketing surveillance of herbal medicines.

It is hoped that the future of the dietary supplement industry will include a focus on scientific research. This should include phytochemical profiling, toxicology and pharmacokinetic studies in animals and humans along with standardisation of manufacturing, processing and quality control of herbal products. This will provide patients with safety and efficacy, and the added knowledge will benefit clinicians and the public.

8 S.A. and G.J. Ombler Charitable Trust

Two summer scholarships have been awarded this year by the trust. They are:

1. Title: Quantitative analysis of compressive optic neuropathies with optical coherence tomography and Heidelberg retina tomography and correlation of morphological appearance of the optic nerve with visual field defects.

Supervisor: Associate Professor Helen Danesh‑Meyer, Department of Ophthalmology

Student: Yu Hwee Tan

The specific aims of this study include: to evaluate the hypothesis that retinal nerve fibre layer (RNFL) thickness, macular thickness and macular volume correlates to visual field indices (tests) in compressive optic neuropathies.

To determine whether macular thickness and volume correlate with RNFL thickness in its association with compressive optic neuropathies.

To evaluate the role of the Optic Coherence Tomograph (OCT) and the Heidelberg Retina Tomograph (HRT) in diagnosing structural changes in the optic nerve head and the surrounding nerve layers due to compression optic neuropathies.

2. Biochemical consequences of bright light exposure in RP rat models.

Aim: To investigate the underlying metabolic defects caused by light damage in a rat model of retinal degeneration.

Supervisor: Professor Michael Kalloniatis

Student: Cheong Yih Liang

9 Successful Retina NZ Inc AGM and Conference

A successful AGM and conference was held in Auckland on the 27th of August. The election of officers was followed by three speakers; Dr Marion Maw of Retina's Scientific and Medical Advisory Board; Professor Michael Kalloniatis of the Department of Optometry and Vision Science, University of Auckland; and Professor Charles McGhee from the Department of Ophthalmology at the University of Auckland. A panel discussion of four members who represented a range of eye conditions followed.

Photograph: Our three guest speakers: Professor Michael Kalloniatis, Dr Marion Maw and Professor Charles McGhee.

Dr Marion Maw

Dr Marion Maw, the Chairperson of SMAB, Retina New Zealand's Scientific and Medical Advisory Board, spoke on the role of this board. She explained that meetings were held via telephone and email, and that the complete group had never met. The Board contributes to Retina NZ publications, and helps New Zealand patients to access new treatments and research developments, both clinical and genetic. SMAB has links with international retina organisations. Dr Maw also spoke about the possibility of registries to link practitioners, patients and treatments.

She then discussed recent research being conducted into understanding the pathogenesis of AMD. Although an understanding of the causes of AMD is incomplete, the immune system appears to play an important role. The retinal pigment epithelial cells seem to be attacked by the immune system. Moreover, a component of the immune system has recently been implicated in genetic susceptibility to AMD. This component is called complement factor H. One particular variant of the complement factor H gene is twice as common in people with AMD than it is in people without AMD. Dr Maw noted that understanding the causes of AMD should bring about a shift from treatments targeted at late‑stage symptoms to strategies that prevent progression of early stages of the disease.

Professor Michael Kalloniatis

Professor Kalloniatis spoke about his research on retinitis pigmentosa, particularly his clinical research into retinal neuro‑chemistry and neurobiology.

Firstly, he described the use of mouse models to discover how the retina develops. This has highlighted early evidence of degeneration in the photoreceptor cells. Secondly, Professor Kalloniatis explained that he has examined retinal metabolisms to determine how the retina derives energy, breaking down glucose as an energy source for the photoreceptors. He has stressed the mouse retina by reducing its glucose and oxygen to see if the retina can develop a secondary energy source.

Professor Kalloniatis hopes this research can be used to alter the rate of photoreceptor degeneration, possibly through a diet rich in Vitamin A, derived from fish oils. It is already well known that some AMD patients benefit from a diet high in anti‑oxidants.

His research has also concluded that a large ion flow triggers cell death and this could be a possible trigger for photoreceptor degeneration. Minimising exposure to light, particularly bright light which can cause damage to those with RP, is very important.

Professor Charles N. McGhee

Professor McGhee spoke about cataracts, noting that when he first came to New Zealand little data was available on cataract surgery. Cataracts occur for several reasons; the primary ones are age, diabetes, steroids, trauma, retinal disorders, inflammation, congenital cataracts ‑ particularly those caused by exposure to toxoplasmosis, and genetic factors. There are many types of cataract, and a general loss of visual function occurs in tandem with the development of cataracts. They also occur as the result of other eye disease such as glaucoma, diabetic retinopathy and hypertension.

Professor McGhee explained that cataract surgery began in India 4000 years ago. The first intraocular lens, invented by Sir Harold Ridley, was inserted into the eye in 1949. Their use has been routine since 1985. The lenses are made from acrylic and are inserted in a three step process. The cataract is subject to photo emulsification, then a hollow needle and ultrasound are used to remove the cataract. The new lens is folded in half and is then inserted through a 3mm incision. It can take up to one month for vision to improve following this surgery.

The Auckland cataract project has found that 75% of cataract patients are female, 98‑99% achieve a successful result following surgery, and that up to 1 1/2% can be worse off following surgery.

Professor McGhee also described the development of an implantable miniature telescope which can be inserted in the lens area. It enlarges the image by 3x magnification and can bring a gain of a couple of lines on the eye chart, its use is mainly for reading.

Panel Discussion

A panel of four members, Fraser Alexander, Susan Mellsopp, Major Thelma Smith and Kiran Valabh, answered questions about their sight loss. These included its social and emotional impact on their lives, family reactions, its influence on their working life, sources of help and advice, and the positive aspects sight loss had on their lives. Answers were varied and interesting, with a theme of coping, help from the RNZFB and friends, and a need just to get on with life predominating. When asked what they would have done differently the panel members felt that asking for help earlier rather than later was important.

Photograph: Kaye Clark, Kiren Valabh, Major Thelma Smith, Camille Guy, Susan Mellsopp and Fraser Alexander.

10 Snippets

Peer Support Reference Manual

Retina New Zealand launched its Peer Support Reference manual as a resource for the peer support team in late August. Partially funded by a grant from the AMD Alliance, the manual was written by the National Peer Support Coordinator Elizabeth East. Information in the manual has been obtained from several different sources including the Royal New Zealand Foundation of the Blind, staff from various Government departments and agencies, the New Zealand Association of Optometrists, and members of Retina NZ.

The manual has been produced in normal print, large print and on a CD. The subjects covered were sourced from the wide range of questions asked by those contacting the 0800 number since its inception. These include: an overview of the different eye conditions, sunglasses and eye health, employment related support, the total mobility scheme, web based information for those with low vision, living with sight loss, leisure options and audio book technology. The information included in these and other sections of the manual is used by the peer support team when answering calls to the peer support service which operates nationwide on 0800 233 833.

The Three Blind Mice

Three members of Retina NZ ordered a taxi to transport them from Awhina House to the Sky City bus terminal in Auckland following the AGM. On arrival at the bus terminal one member with partial sight held two guide dogs and with their help, one in each hand, safely negotiated the steps and crossed the road to the bus terminal. The almost totally blind member retrieved 3 suitcases from the boot of the taxi, and without being able to use her dog found her way up the steps and across the road with two of the suitcases in tow. The third member, who had been paying for the taxi, had a white cane in her backpack and was spotted by a member of the public who suggested that perhaps she might like some assistance to cross the road to the bus terminal. She was carefully escorted by the said member of the public to safety. The three members, who are still laughing at this incident, have been left wondering just which of them was seen as the most blind!!!

11 Branch News

Waikato Support Group - Susan Mellsopp

A very successful meeting of Waikato members was held at Susan Mellsopp's new home on the 30th of August. 17 people including members, their drivers and family members attended. One member celebrated their 91st birthday at the meeting. Following introductions Elizabeth East, National Peer Support Coordinator, spoke on her experience of sight loss in a talk entitled 'Will I be Blind by Easter or Christmas". She followed this with some advice on healthy eating for healthy eyes. This has been included in the coping section of this newsletter.

Lynn Keogh, Chairperson of the Otago/Southland Branch, spoke on her experience of attending Outward Bound which included rafting, sailing, tramping, camping, rock climbing and abseiling. She also described participating in a triathlon, tramping in the Eglington Valley in Fiordland, and cycling the Central Otago rail trail which goes from Clyde to Middlemarch. Lynn encouraged members not to restrict their lifestyle because of sight loss.

Afternoon tea brought the chance to share, get to know other members and plan future meetings. It is hoped to have another get‑together in November. For further information please contact Susan Mellsopp on 853 3612.

Christchurch Branch - Kaye Newton

About 30 people attended our meeting on the 19th of August when Dr Caroline Lintott was the guest speaker. She is a senior genetic associate for the Central and Southern Genetic Services. Her talk was specifically aimed at our audience and covered both RP and MD, and she explained the core concepts of genes and DNA. This was followed by a discussion where members had been asked to bring handy hints to share. One member brought along his gardening tools with bright fluro coloured handles. This was followed by refreshments and the usual lively conversation.

Our end of year gathering is to be held at the RNZFB meeting room, 96 Bristol Street, Christchurch, on Saturday the 26th of November at 5.30 pm for an evening meal. Please bring a salad. Any visitors from other regions would be most welcome.

Otago/Southland Branch - Lynn Keogh

All members and friends of the branch are cordially invited to a finger food luncheon to be held at the Belleknowes Golf Club on Sunday 4 December 2005 from 12 noon to 3.00 pm. Please RSVP by Thursday 1 December to Helen Adams by telephoning her on 03 467 2278 or email at hgadams@slingshot.co.nz or to Dawn Cole by telephoning her on 04 487 8972. We look forward to seeing you all there.

For inquiries regarding a List of Publications which are available from Retina NZ, please contact Janet Palmer, National Secretary, telephone (04) 299 1801 or write to Retina NZ, P.O. Box 17-242, Wellington or email secretary@retina.org.nz

DO YOU NEED HELP OR ADVICE?

The Retina NZ Peer Support programme is a free and confidential service, operating nationwide. To make contact with one of Retina New Zew Zealand's peer suppporters, telephone 0800 233 833. All calls are treated in strict confidence.

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

(Northern Regional Genetic Service) 0800 476 123

Wellington Genetic Hotline 0508 364 436

Christchurch Genetic Hotline 0508 364 436