The Newsletter of Retina New Zealand Inc

The New Zealand delegation to the 14th Retina International General Assembly and World Conference held in Rio de Janeiro consisted of Kaye Newton (President), Fraser Alexander (International Delegate) and Christina van der Wal (Fraser’s partner). The theme of the conference was ‘Scientists and patients-Partnership for the Future’. This meeting was unique for the development of Retina International. The first meeting held in South America, it brought together Retina International members, eminent vision scientists, Brazilian ophthalmologists, and an enthusiastic and hospitable gathering of Brazilian patients and their families and friends.

The conference schedule over five days followed a similar programme to previous meetings. It began with continuing education, the Retina International General Assembly, and then three days of clinical and scientific presentations which included patient and parent perspectives.

Retina International relies on individual countries contributing voluntary time and donated resources to achieve a set of goals contained in 2 year work plans. It was agreed 2006-2008 would be a time to advocate at every opportunity for greater deployment of government and corporate resources to the fight to cure retinal blindness. Please visit www.retina-international.org or contact Fraser Alexander (fraserale@xtra.co.nz) or on 09 6388 091 to learn more about how you may be able to assist on a global basis.

The scientific and clinical presentations commenced with a highly inspiring and very accessible keynote speech given by Matthew LaVail on Neuroprotective Therapy for retinitis pigmentosa and AMD. This set the tone for three days of encouraging news on a number of fronts. As is customary at Retina International conferences Professor Jerry Chader, a master at translating new clinical and scientific developments to patients and interested lay persons, gave an excellent overview and summary at the end of the conference. The summary examined each main category of treatment approach followed by concise and generalized commentary on the progression towards treatments since the last Retina International conference, and what the next 2-5 years hold in store. I will briefly summarise Professor Chader’s summary, and direct Retina NZ members to further sources of information at the end.

In regard to the genetics of retinal degenerations, Professor Chader reinforced the point that all retinal degenerations were inherited and that treatments would generally be gene dependent. All patients should know their gene mutation if they wish to contribute personally to the worldwide drive towards treatments. He stressed the importance of identifying all the genes causing retinal degeneration as without this information all research approaches would have their efficiency and effectiveness compromised throughout all stages of clinical trials. Progress on identifying RD genes has been amazing since the first discovery in 1990, and this is expected to continue.

RP: A total of 108 genes has been identified which probably accounted for only 50% of causative genes.

AMD: 8 genes had been identified which probably accounted for 75% of AMD genes.

Lebers: he estimated that around 70% of the LCA genes had already been found.

Exciting results continue to be reported in gene therapy. Lancelot, the dog model, and his siblings, continue to demonstrate remarkable success in creating functional vision using gene replacement. One treatment in one segment of one eye 6 years ago had restored function to 1/3 of his retina. The notion that gene replacement could be the ‘one solution fits all’ treatment approach continues to find favour with vision researchers. The 2006 conference in Rio de Janeiro seemed to reinforce gene replacement at the dominant approach. Human clinical trials on a small sample of Lebers patients will commence in 2007. Their initial Phase 1 trials will focus on dosage and safety requirements, but restoration of vision data will be recorded. Trials using gene replacement are now being planned for conditions such as Choroideremia, Ushers Syndrome and Stargardts Disease.

In the field of prosthetic implants it was reported that the artificial silicon retina (ASR) has been used to mimic the function of the photoreceptor cells which are affected in most retinal diseases. Both the sub-retinal and epi-retinal chips are now well advanced in terms of safety and construction design. In a session entitled ‘Artificial Vision, the Epiretinal Approach’ by Dr G. Fujii, results of the first generation intraocular retinal prostheses were reported. 6 patients had been fitted with the IRP. Videos were shown where a patient successfully identifies a cup, plate, and spoon. The miniature video camera mounted on a pair of spectacles also looked promising. The cortical implant was still being investigated, but there seemed to be relatively few resources committed to this approach. While there appears to be little progress in the field of photoreceptor cell transplantation in recent years, the conference heard better news with respect to pharmaceutical intervention initiatives. Successful Phase 1 Neurotech trials of encapsulated cell technology (ECT) were reported for the delivery of Neurotrophic factors. Other encouraging examples of pharmaceutical treatments included the anti-angiogenic drugs for the treatment of wet AMD.

At previous similar gatherings there had been little evidence of correlations between nutrition and supplement regimes, and prevention or slowing of photoreceptor cell death. This appears to be changing. Evidence is emerging showing oxidative stress is a factor in apoptosis (a process of programmed photoreceptor cell death). The role of anti-oxidants in slowing apoptosis has now been shown to be indisputable. Work by Campocheiro and van Veen had tested an anti-oxidant complex on 7 different rodent models, degeneration slowed in all the models. Professor Chader told me all patients with retinal degenerations should consider consulting their ophthalmologist with a view to taking an appropriate anti- oxidant to slow the process of photoreceptor cell death, likely slowing the process of vision loss. The AREDS trial testing supplements for AMD were useful, and a large trial to test Lutein supplementation was underway.

Should you require more detailed information on any of the treatment approaches presented in Brazil, I suggest you visit www.blindness.org or contact me on 09 6388 091 to assist with finding the information you are looking for.

I wish to thank Retina NZ for the opportunity to represent you, and look forward to the challenges associated with being part of the Retina International management committee. My role with this committee will involve marketing and fundraising. I welcome your involvement, support, or suggestions.

Minerals

Minerals are trace elements that are required in much smaller quantities than vitamins. Minerals are mostly involved in physiologic functions such as carrying electrical impulses or serving as part of enzyme systems. These minerals must be supplied from external (dietary) sources and include zinc sulphate, selenium and copper.

Zinc Sulphate

Zinc is an essential trace element and is found in dietary sources such as seafood, liver and eggs. It is an essential part of two antioxidant enzymes and is necessary for proper wound healing. Zinc has been postulated from some studies to be an effective treatment for cataracts. However, other studies have shown that elevated ocular zinc concentrations may cause cataracts. It has been strongly suggested that zinc from dietary sources and/or supplementation reduces the visual deterioration in some types of ARMD.

Zinc deficiency leads to symptoms similar to those of Vitamin A deficiency. This is due to the role zinc plays in the regeneration of photopigments (retinol to retinal requires zinc). Deficiency may result in:

Night blindness

Reduced colour perception

Hyperkeratinisation (thickening) of the lid margins with stenosis (narrowing) of the puncta

Blepharitis

Conjunctivitis

Photophobia

Selenium

Selenium is important in the functioning of the antioxidant enzyme glutathione peroxidase. This enzyme is particularly important in catalyzing the breakdown of peroxide which can produce ocular tissue damage. Selenium may also have a role to play in the prevention of ARMD.

Copper

Copper is an important part of many metalloenzymes and therefore plays an important antioxidant role. Dietary sources for copper include liver, seeds and nuts. However, copper toxicity is potentially fatal, and can certainly cause ocular manifestations in the cornea (Kayser-Fleischer ring) and the lens (sunflower cataract).

Phytochemicals

Some studies have documented that ingestion of certain foods decreases the risk of diseases related to long-term wear and tear of the body. This suggests that components of food such as phytochemicals are important compounds that decrease injury. There are thousands of these phytochemicals in fruits and vegetables, yet little is known about them as many have yet to be characterized.

Phytochemicals such as the carotenoids (yellow to red compounds in fruit and vegetables) have been demonstrated to decrease the risk of developing advanced ARMD. An increased intake of spinach was reported to be associated with a lower risk of cataract extraction, but a high intake of B-carotene and Vitamin E showed no beneficial effect.

Free Radicals

Free radicals are highly unstable molecules that are generated by UV radiation, tobacco smoke, organic solvents, pollutants, pesticides and radiation. Free radicals can destroy plasma membranes and other structures with a high fatty acid content. The eye is particularly prone to free radical damage because it has a high concentration of oxygen, is exposed to large amounts of UV radiation, and has a large amount of fatty acids in the rods and cones. Free radicals have a very high association with cataracts, ARMD and malignancies.

Eating Fats Sensibly

Dietary fats are molecules called triglycerides. These fatty acids can be defined as saturated or unsaturated. They are an important structural component in the cell membrane of the cells in our body. The fatty acid structure alters the structure of the cell membrane and affects the function of the cell with regard to the transport of products in and out of the cell.

Polyunsaturated and monounsaturated fatty acids have beneficial effects on cell membranes by increasing membrane fluidity. Saturated fat, or cholesterol, increases membrane rigidity. Trans-polyunsaturated fatty acids have a similar structure to saturated fats, but are poorly metabolized.

Care is required when selecting the appropriate oils for cooking. Canola converts easily to a trans fat when heated, olive oil is more resistant, rice bran oil and peanut oil are very resistant.

Essential fatty acids are required in the human diet and must be obtained from food. There are closely related families of essential fatty acids; Omega 3 and Omega 6. These acids are mediators in inflammation, cellular signaling, blood viscosity, neuro-protection, gene regulation, mood and behaviour.

Sources of Omega 3 are:

fish, shellfish, flaxseed, pumpkin seeds, leafy vegetables, walnuts, free range eggs, milk and cheese.

Oils rich in Omega 6 are:

soya, canola, peanut, grapeseed, corn.

Dietary sources include:

cereals, eggs, poultry, baked goods, whole grain breads.

Omega 3 and Omega 6 need to be consumed in balanced proportions, the ideal ratio is 3:1.

What does this mean for the eye?

Rhodopsin and cone opsins are membrane bound vision and may be affected. Blood supply to retinal pigment epithelium can be affected due to atherosclerotic and pro-inflammatory effects. Aqueous outflow is regulated by prostaglandins and intra-ocular pressure may be affected. Meibomian glands are affected, so pro-inflammatory mediators may exacerbate dry eye problems. The retina has high levels of a form of Omega 3 so the eye is susceptible to Omega 3 deficiency in the diet.

Studies on rats have demonstrated that an Omega 3 deficient diet has a reduced retinal function after just 5 weeks. They also developed reduced aqueous outflow and therefore raised intra-ocular pressures increasing the risk of glaucoma. There is also evidence that Omega 3 plays an important role in neuro-protection. This is important with respect to retinal ganglion cells.

So what should we be doing?

Reduce saturated fats, use sparingly in cooking, and use mono-unsaturated fats eg. olive oil. Supplement mono-unsaturated fats with poly-unsaturated fats eg. flaxseed, walnut, canola, soya, peanut. A mixture of fats is best, but emphasize Omega 3 supplements.

The recommended daily intake of Omega 3 is 500-4000mg, so we all need to eat fish at least twice a week, nibble on nuts and legumes, and select enriched foods such as eggs. Supplements of fish oil and flax oil are important but it can take 6-12 weeks for results to become apparent.

Snippet: Retinal Changes and Heart Disease in Women

Retinal artery thinning is one of the first signs of hypertension. It has been shown that women with the narrowest arteries in the retina have double the risk of developing serious heart problems. Researchers studied the association between retinal arteriolar narrowing and the incidence of cardiac heart disease in healthy middle aged men and women. Digital retinal photographs were taken of nearly 10,000 people. 4 years later 171 of these people had experienced a cardiac event. An increase in retinal artery diameters showed a 1.37 increased risk for women.

5. RNZFB Community Committees in Action: By Alison Marshall: National Manager Volunteer Services/Locality Coordinator

From Whangarei to Invercargill the Foundation’s 43 Community Committees play a pivotal role in maintaining the link between the Foundation of the Blind and members in their local area.

In 2003, with the change of governance, the old Advisory Committees evolved into Community Committees. While supported at a local level by Locality Coordinators (Foundation staff who have taken on this role in addition to their normal roles) the Committees are in fact responsible to the Chief Executive. Paula Daye has a high level of interest in the work of the Committees recognizing that they are the ‘local face of the Foundation and are part of the vital support network the Foundation provides to its members’.

The Committees’ key purposes are to: enhance the delivery of services to blind, deafblind and vision-impaired people in the area; to raise community awareness of the needs of people with a vision impairment; and, to assist with fundraising activities in the region as appropriate. What makes the Committees so effective is their ability to tailor their involvement to suit the needs of their community and the strength and capability of the Committee members. The Foundation recognizes that each Committee is different in both focus and processes, and that this difference represents diversity and strength. Commonsense tells you that what is needed and will work in Auckland isn’t going to be the same as in Westland or Central Hawke’s Bay.

Each Committee enters into a Memorandum of Understanding with the Chief Executive. This two-way document outlines the Foundation’s commitment to the Committee to provide orientation training, financial and information resources to support their activities, and to recognize the work of individual volunteers on the Committee. The Committee in turn agrees to maintain the privacy of the information it receives from the Foundation, especially that relating to individual members, and to identify the specific activities it will undertake, in addition to the usual functioning of a committee.

Community Committees offer the opportunity to bring local members together for social activities, be they morning teas, coffee mornings, special outings, and end-of-year socials are prime activities. Other activities carried out by Community Committees throughout the country may include: member support, social/recreational events for members, talking book machine co-ordination and maintenance, local advocacy and liaison with community support services and networks, and maintenance of the news service and telephone tree. Fund raising activities are an important aspect of Community Committee work, along with liaison with City Councils and community bodies, public relations, and policy input and advice. In addition to all this, the Committees can identify specific areas of interest which they will carry out in their area.

Committees review their memorandums on an annual basis, usually just after their annual public meetings, this is to ensure they are still relevant and meet the needs of their communities. Annual public meetings are held in July and August of each year, and the Committees’ are keen to encourage new people to join. Many of those who volunteer to be part of their local Committee are either Foundation members themselves or have some connection to a member. The involvement of the wider family of many members can have immense personal benefit outside of the Committee, particularly as it is one way to learn more about the needs of vision impaired people and the support and services the Foundation can provide. The Committee in itself can become a support network. Non-Foundation members on Community Committees along with family, relatives and friends and other interested people can join the organisation as Associate Members. They are able to nominate a candidate for election to the Foundation’s Board of Directors.

Given the importance of the Community Committee’s work, it is important for the Foundation to provide ongoing support and communication. This happens through the regular contact of the locality coordinator and the twice-yearly regional forums that are held around the country. Representatives from local consumer groups are also invited to these forums, which not only provide the chance for discussion about the different activities the groups are involved in, but also the opportunity to raise with senior Foundation staff issues and concerns relevant to members in their area.

One of the new initiatives that has received overwhelming support from Community Committees has been the North and South Island gatherings. Held for the first time in this format in 2005, two representatives from each Community Committee attended either the Auckland or Christchurch gathering.

Through Community Committees nearly 400 people help the Foundation’s 11,700 blind, deafblind, and vision-impaired members achieve their goals and remain independent. These local networks are invaluable to the Foundation and ensure its work reaches those who need it.

6. Coping: How Does Your Garden Grow

If gardening is your passion don't let vision loss get in the way! Here are some helpful tips and resources.

1. Set up a basic layout with straight and uniform garden beds; use a cane as a guide for planting a straight row, or lay down two fishing lines and plant seeds between them.

2. Place a brightly coloured strip down the centre of any pathway for easier orientation or use texture like gravel or bark.

3. Wear an apron with plenty of pockets or a utility belt to hold your gardening equipment.

4. Try sensory gardening. Grow plants with distinguishable scents or tactile clues that help you identify them easily. Good choices are: geraniums (mint, lemon, rose) and herbs (basil, thyme). Consider plants with interesting textures like the fuzzy leaves of an African violet or the large flowers of an amaryllis plant. Grow lavender inside and enjoy the smell.

5. Use large print markers or tactual borders (container gardening for example) to help with plant identification and reduce maintenance time.

6. Place mulch or landscaping felt between plants and seedlings to help reduce the need for weeding.

7. Paint garden tools, such as hoes and rakes, to make them easier to see when you are using them. White paint on the tines of a hoe provides excellent contrast with the soil.

8. Place high contrast borders around trees or flower beds to make these areas easy to identify when mowing the lawn.

9. Use a guideline, such as the top of a fence, to help you trim hedges and bushes evenly.

7. Coping: Personal Care

Cleaning Your Teeth

You can measure the required amount of toothpaste by grasping the bristles of the toothbrush between the thumb and index finger squeezing the toothpaste along the bristles. If you put an identifying mark on a toothbrush (tactile dot or rubber band) you can identify it from other family toothbrushes.

Foot Care

You may prefer to go to a podiatrist. It is safer to use toenail clippers and emery boards rather than nail scissors. You can care for your feet by using readily available products such as hard skin remover creams or by soaking your feet in warm water and oil. Use a magnifying mirror and a good focal light when checking feet. This is particularly important for people with diabetes. Where possible have a sighted person check your feet.

Hand Care

Filing the nails with an emery board is recommended, rather than scissors. Nail polish in paler colours is less obvious if the nails are chipped or if errors are made during application. Some people use buffing powders instead of nail polish as they give nails a natural shiny appearance. Nail colouring pens may be easier to use than brush-on polish. People might also like to treat themselves to a visit to the manicurist from time to time.

Make Up

Sort out your make up bag to get rid of items no longer used. Cosmetics should be well labelled and easily identified.

Use a free standing magnifying mirror and good lighting. Take a mirror to a brighter room or to a window to take advantage of natural light. A magnifying mirror on a flexible arm can be installed on a wall and brought close to the face. It leaves hands free to apply make up or to shave. Use a cape around the shoulders to cover clothing and a shower cap to cover the hairline if the hair is light coloured. Buy soft shades of make up. They are less obvious if they are applied in error. To apply liquid foundation dot a little with your fingertip onto your nose, cheeks, chin and forehead. Blend with sea sponge that has been lightly dampened. Remember to have your hair tied well back. Apply face powder with a blusher brush. Compressed, translucent powder is easiest to use. When finished dust your face over once more without further powder. Apply powdered blusher with a brush along the line of your cheekbone. Apply up to where your hairline meets the top of your ears and blend well. Do not colour too close to your nose or down into the hollow of your cheek. Dust lightly with a clean cotton ball. It is possible to have your eyelashes tinted professionally as an alternative to mascara. An application will last 3-4 weeks. Apply powdered eye-shadow with your fingertips to help give an even coverage. Lipstick can also be applied with your fingertip. If possible have someone with you while you practice to give you honest feedback.

Hair

Use shampoo and conditioner in different shaped bottles to avoid confusion. Alternatively, put a contrasting marker or elastic band on one of the bottles. Visit the hairdresser at regular intervals to keep the hair neat and tidy.

Shaving

Much of the task of shaving is tactile, areas which have been missed can be felt. Good coverage can be ensured by using overlapping strokes and shaving the area over again at a 90 degree angle to the original strokes. An electric shaver is safer for people with vision loss.

Shaving Your Face

A fluorescent light above the bathroom mirror can make shaving easier and safer. Using shaving cream can help you distinguish areas that have not been shaved from those that have. Locate landmarks, such as the point on one’s ear, with the hand not holding the razor as this can assist where to shave. After lathering your face, hold the razor with the thumb and index finger at either side of the head and your fingers curled around the handle. Your free hand should be used as a guide. Bring the razor close to your finger before removing your finger. Draw the razor at an angle over the cheekbone working from the sideburn down to the chin.

Shaving Your Underarms

Raise your arm straight over the head and towards the back to create a flat surface. Place the razor at the top of the hair growth on the arm. Draw the razor downwards, repeat over the whole area using small overlapping strokes.

Shaving Your Legs

Find the area above the head of the ankle and place the razor there. Draw the razor smoothly and lightly upward towards the knee. Repeat this stroke around the whole leg, and overlap each stroke. Check for stubble by running the free hand up the leg. Clean the razor after each stroke.

Showering

When purchasing soap buy a contrasting colour to that of your shower. This makes it easier to find the soap when dropped. Use your foot to find soap you have dropped, this prevents banging your head on the shower walls or slipping over.

This information was downloaded from the Vision Australia website at www.visionaustralia.org.au

8. Snippet: Award for Kaye Newton

Our President received the inaugural community service award for her work for Retina NZ presented by her employers, Polson Higgs, Financial Advisors. They donated $250 to Retina NZ, and presented Kaye with grocery vouchers for her own use.

A very well deserved award for Kaye who puts in many voluntary hours of work for our organisation.

9. People: Kiran Valabh

I was born and bred in Auckland. My education culminated in completing a BCom/LLB. I first incurred eye problems while studying law, resulting in a retinal detachment and temporary blindness 18 months later. Rather than pulling out of my studies I chose to continue, this served as a distraction.

Technology greatly assists my work practice as well as enhancing my participation in society. Apart from working in the property management and investment field, volunteer work is an important aspect of my life. This is my way of contributing to society in return for the kind support people have given me over the past 14 years. I am currently a Youthline counselor.

I still enjoy reading, albeit in a different way now. Cutting edge science has always been a fascination of mine and of course now I have a vested interest in learning about current medical research through the society. I remain a fitness freak and have continued attending sports fixtures at Eden Park. Since incurring sight impairment I have taken up many interests like the guitar and poetry which I cannot imagine I would have pursued had I not experienced visual impairment. My journey with sight impairment has given me an opportunity to embrace life with compassion, sincerity and humour. It has definitely made me a better man in coping with all the challenges I face in life.

Some of my goals this year are: to expand my business, take a couple of further business papers at university, continue to develop my extensive computer skills, resume walking home from the office and gym. I hope to perform my role as treasurer and executive committee member of Retina New Zealand with passion, diligence and hard work.

Kiran was elected Treasurer of Retina NZ in August.

10. Branch News