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Summer Newsletter

February 2004 No. 20

From the Editor

In the member survey last year, some print readers asked for changes in our newsletter format. In this issue it is in black and white as usual for maximum contrast and is on non shiny paper for the benefit of CCTV readers. It is also shrink wrapped by the printer, thus saving office time inserting it manually into envelopes. We have enlarged the print size and printed it in bold type in two columns. It now boasts a cover page, on the front of which is listed the various sections and their page numbers. Inside the front cover is our Mission Statement, important addresses to contact, closing dates for articles and how to order it in the format you want.

On the inside back cover we list our Publications - Booklets, Free brochures and Leaflets (already printed in previous newsletters in the Coping section­) and tell you how to order them.

Please let us know if you find this new type of print newsletter easier to read. Tell us what you like and dislike about its new format. We need to now if we are getting it right and if you find it easier to read.

By the time you read this I will also have made a significant change in my life. After living in Dunedin for the past 26 years, the last 19 in my current home, I have sold my house and re‑located to a retirement village in Wellington. With severe RP and two cataracts developing and only seeing silhouettes in black and white contrast, I now feel the need to be closer to my family in Wellington. I know that leaving all my wonderful Retina friends, the Foundation staff and volunteers who have supported me in so many ways during my Dunedin years will not be easy. But there is still the phone and email or snail mail by which you can contact me. My new contact addresses are listed at the bottom of the page.

A happy and enriching 2004 to you all!

June Ombler

Apt. C16, Rita Angus Village, 66 Coutts Street, Kilbirnie, Wellington

Phone: (04) 387 4553

Email: jombler@xtra.co.nz

From the President's Desk

Welcome to 2004. I had a nice break from work and Retina work enjoying the great weather we had in Christchurch over the Christmas New Year period. I think home was the best place to be then.

Elizabeth East, our peer support co‑ordinator has now set up our own 0800 phone number for peer support. The number is 0800 233 833, which is easy to dial and remember. All we need now is for YOU, dear member to pick up the phone and make use of this service. You could help make our peer supporters' day by making them feel needed and useful! If there is information you want to find out, we have networks to find out the answer if we don't already know. Or you may just need a chance to talk to someone about the frustration or worry of living with a retinal condition. Our society particularly encourages the participation of family members or partners. They too, feel the effects of living with someone with a retinal condition but may not always get the support they deserve. I know I was the first to call the new number, now it's your turn.

Please note our change of post box number to P O Box 17 242, Wellington 6033. We will only be changing the details on our publications as they come to be reprinted. However, mail sent to the old number will still find its way to Janet Palmer, our secretary ‑ it just takes a little longer.

This month, I was pleased to be able to attend a farewell held in Dunedin in June Ombler's honour. Nearly sixty people came from all over Otago and Southland to see her at the function which included speeches from Gordon Sanderson and a message read out from Don McKenzie the Chairman of RNZFB and a poem read by staff members. It was very apparent that she is held in very high regard and affection in Dunedin where she has been a very active member of the blind community in many roles, latterly as a member of the aged Care Consultative Sub Committee of the Otago Health Board and the Disabled Person's Assembly Transport Working Party, as well as being on the Dunedin Advisory committee (now called community committee). Her former involvement with ABC was noted as was her influence as an advocate for many blind people and also on professional people who have met her over the years who now hold senior influential positions.

She is moving to a retirement village in Kilbirnie, Wellington to take up residence in a brand new apartment. However, she is keeping on with being editor of our newsletter for the time being. One day she might have time to retire! For those of you who are more recent members, June is the woman who started the NZRP society in the South Island which later became Retina NZ. She inspired me to join up with Retina when she organised and spoke at a meeting in Christchurch to start a branch there back in 1993. We wish June all the best in her move

Aucklanders, you will be hearing from us next month. We are calling a meeting in Auckland over the weekend of 1st/2nd May while all of the executive are up there attending a planning meeting and the consumer consortium at the RNZFB. We look forward to meeting as many of you as possible.

Kaye Newton, 7 February 2004

Research

The Genetics of Blindness

From McGill University, 9 October 2003

Copyright 1999‑2003 Science Daily Magazine

Treatment for the most common inherited cause of blindness, retinitis pigmentosa, is one step closer, according to investigators at the Research Institute of the McGill University Health Centre (MUHC). They are the first to link two new gene mutations in two French‑Canadian families to loss of vision in humans. Their findings are published in this month's issue of the American Journal of Ophthalmology. This project was funded by the Canadian Institutes of Health Research (CIHR), les Fonds de la recherche en santo du Quebec (FRSQ) and the Canadian Foundation Fighting Blindness.

Approximately 1.5 million people worldwide are affected by retinitis pigmentosa, which at the moment has no cure. This disease causes vision loss by progressive degeneration and death of the cells that make up the retina, the portion of the eye that responds to light.

"Retinitis pigmentosa is a devastating and complex disease," says principal investigator, Dr Robert Koenekoop, director of pediatric ophthalmology at the Montreal Children's Hospital of the MUHC. "Many genes, gene mutations and symptoms are involved. The first steps to developing a treatment are the characterization of all these factors. Important progress has been made by identifying two important gene mutations present in the French‑Canadian population."

Koenekoop in collaboration with MUHC geneticist, Dr. Guy Rouleau, examined two very large French‑Canadian families afflicted with retinitis pigmentosa for four generations. Ophthalmic evaluations and genetic analysis were used to characterize the gene mutations and the resulting phenotype. They demonstrated that these mutations resulted in variable, severe forms of the disease and in some cases other neurological disorders, such as hearing loss.

"Our findings show that different gene mutations result in different symptoms of the disease," says Rouleau. "Our study will provide hope to those families who have suffered from this disease for generations and will lead to new screening and diagnostic tests."

"We were fortunate to have the facilities and expertise to make this discovery," concludes Koenekoop. "This project was an excellent example of genetic and ophthalmic cross‑disciplinary research." About the Research Institute of the McGill University Health Centre The Research Institute of the McGill University Health Centre (MUHC), located in Montreal, Quebec, is Canada's largest concentration of biomedical and health‑care researchers. The institute has over 500 researchers, nearly 650 graduate and post‑doctoral students and 306 laboratories devoted to research. The mission of the institute is to facilitate investigator‑initiated and discovery‑driven research that creates new knowledge. This research is inextricably linked to clinical programs, which provide a bench‑to‑bedside‑to‑community continuum. The MUHC research institute is renowned as a world‑class research institution that operates at the forefront of new knowledge, innovation, trends, and technologies.

Cause of eye disease found

From Health Day News, 4 October 2003

The source of a gene mutation that causes retinitis pigmentosa has been identified by researchers at Dartmouth Medical School in the US. As well as providing a better understanding of the incurable eye disease, the study may also be a step forward in finding a way to treat retinitis pigmentosa (RP), which affects about 1.5 million people worldwide. Many people with the disease become legally blind by the time they reach the age of 40.

The Dartmouth scientists report their finding in the Oct. 3 issue of the Journal of Biological Chemistry.

Taking a closer look at rhodopsin:

They focused on the gene rhodopsin. It's a protein located in the back of the eye, one of several proteins that controls how the eyes detect light. Rhodopsin plays a role in the ability to see in dim or low‑light conditions.

Retinitis pigmentosa, which affects the photoreceptors in the retina, begins with a single mutation within the rhodopsin protein. This mutation triggers a domino effect that, over a number of years, results in the death of retinal cells, destruction of the retina and eventual blindness.

We wanted to concentrate on the reasons why rhodopsin is prone to misfold; that way we have the best chance of correcting that distortion before the disease can worsen, lead author Dr John Hwa, an assistant professor of pharmacology and toxicology, says in a news release.

Crucial amino acids pinpointed:

We now have a molecular understanding of the abnormal proteins so we can move ahead to the ultimate goal of designing effective drugs to delay the degeneration that occurs to people suffering from RP, Hwa says.

He and his colleagues now plan to study the impact of certain vitamin A derivatives on the rhodopsin mutations.

Going to Europe in the northern summer?

Anyone going to Europe in June or July this summer has the opportunity to attend the 13th Retina International World Congress 2004 ‑ "Focus on Seeing". This will be held in Noordwijk, a town on the Dutch seashore.

Many excellent speakers have been invited and exciting prospects for future treatments and improvement of vision of people with retinal problems will be discussed. The understanding of basic molecular processes in retinal diseases is expanding fast. Hereditary dystrophies of the retina may turn out to be treatable in the long term, while at the same time studies on artificial vision show clear progress. After the introduction of photodynamic therapy (PDT) more pharmacologic agents are finding their way in the treatment of age‑related macular degeneration (AMD).

Leading scientists in the field of Retinitis Pigmentosa, Macular

Degeneration, LCA, Usher syndrome, Stargardt disease and related retinal dystrophies will present the latest results of their research. Innovative studies on animal models may lead to therapies for the visually impaired.

You may choose to attend a score of lectures: scientific or social aspects, new developments in tools for a better everyday life, etc. During coffee breaks, lunch and desserts there is ample opportunity to talk to other visually impaired people and exchange experiences.

Scientific sessions for Scientists and Ophthalmologists will run concurrently with the Patient sessions and join together at times in plenary sessions.

For the first time there will also be a 5 day retina Youth congress for those aged between 16 and 30 to meet together, have fun and discuss problems of young people with RP, MD and LCA.

For a booklet containing further information, Registration, Hotel and Youth booking forms contact Janet Palmer, National Secretary email retinanz@ihug.co.nz or telephone (04) 476 7329 and leave a message, or go to www.retinanederland.org



Healthy habits help maintain vision

From Wanda Hamilton, AMD Alliance International.

Contrary to what so many people believe, vision loss should not have to be an inevitable consequence of getting older. There are options available for early detection, treatment, rehabilitation and support services and new strategies offering preventative benefits. Although research has not yet identified the causes of age‑related macular degeneration (AMD), nor do we know how to fully prevent it, there are steps you can take to minimize risk factors and decrease the chances of developing AMD or delay the condition's progression.

Make regular eye exams a priority:

Early detection of AMD through regular eye exams is crucial so that options for treatment, rehabilitation and support services can be administered early enough to make the greatest impact. The American Academy of Ophthalmology (AAO) recommends the following general schedule for regular eye exams:

* For individuals aged 40 to 64 with no AMD symptoms, eye exams are recommended every two to four years.

* After age 65 eye exams should occur every one to two years, and even more frequently if recommended by your eye care specialist.

However, if you notice changes in your vision, you should contact your eye doctor immediately. The earlier AMD is diagnosed, the better the chances of preventing vision loss.

Control risk factors:

Quit smoking. Manage high blood pressure. Protect your eyes from UV light by wearing brimmed hats and sunglasses.

Eat a healthy diet:

rich in fruits and vegetables and low in saturated fat. Fresh fruits and vegetables rich in vitamins C and E, selenium, and carotenoids (such as beta‑caroteen, lutein and zeaxanthin) may delay or reduce the severity of AMD. Choose the most colourful vegetables and fruits you can find ‑ red, dark green, orange or yellow. These foods play a key role in keeping your eyes healthy.

Foods believed to be good for eye health include: carrots, corn, kiwifruit, pumpkin,squash, zucchini, yellow squash, red grapes, green peas, cucumber, butternut squash, green bell peppers, celery, cantaloupe melon, kumara and dried apricots. Tomato and tomato products may also benefit the eyes, as well as dark green leafy vegetables including spinach, kale, turnip and collard greens.

Coping

Computer Vision Syndrome

By Wendy Strouse Watt, O.D.

This information was supplied by Macular Degeneration Support at

www.mdsupport.org

One printed copy is provided for personal use only.

People who spend more than two hours on a computer each day will experience symptoms of CVS or Computer Vision Syndrome. The most common symptoms include headaches, focusing difficulties, burning eyes, tired eyes, general eyestrain, aching eyes, dry eyes, double vision, blurred vision, light sensitivity, and neck and shoulder pain.

The human focusing system responds very well to images that have well‑defined edges with good contrast between the background and any letters and symbols. The eyes react very well to most printed material that consists of solid black letters on a white background. The eyes react very differently to electronically generated characters than to printed characters on a page. Characters displayed on a computer screen or video display terminal (VDT) are made up of many, many small dots or pixels. Pixels are the result of an electron beam striking the phospor‑coated rear surface of the screen. Each pixel is brightest in the center, with the brightness decreasing toward the outer edges. When a light meter with a very small aperture is passed across a pixel, with the light amplitude being charted against the horizontal location, the pixel shows a bell‑shaped curve (Gaussian), while the same light amplitude graph of a printed character forms an almost perfect square wave.

The eyes have a very hard time focusing on the pixel characters. They focus on the plane of the computer screen, but cannot sustain that focus. They focus on the screen and relax to a point behind the screen, called the Resting Point of Accommodation (RPA) or dark focus. The RPA is different for every individual, but for almost everyone, it is further away than the working distance to the computer. The working distance is the distance from the computer user's eyes to the front of the screen. So, the eyes are constantly relaxing to the RPA, and then straining to refocus on the screen. It is similar to raising the arm in a position like when volunteering for something or voting by hand and pumping the fist open and closed 40,000 times. The raised arm would get tired, let alone the hand, which symbolizes the focusing that the eyes must do in an 8 hour day. The following diagram illustrates this:

This constant flexing of the focusing (ciliary body) muscles is what creates fatigue, and generates burning and tired eyes. In clinical studies, it has been found that there is a significant difference in the glasses prescription required for focusing on a standard printed near card (called a Snellen card) and focusing on the image of a typical computer screen, both at a viewing distance of 20 inches. Many patients also need a different correction in each eye. In the past, traditional eye exams for near vision have resulted in glasses suited only for reading printed material, not for viewing computer screens. Once an eye doctor accurately diagnoses your computer vision problems, the next step is to produce computer eyeglasses that will allow the person to work comfortably and productively at a computer. One way to accurately diagnose and identify computer vision problems is by using the PRIO diagnostic instrument that simulates a computer screen. The PRIO tester is set at the distance that the patient works on their computer and the prescription is measured at that distance. Standard reading glasses in most cases are not enough. Because your eyes react differently to the stimulus of a computer, 70‑75% of the computer users need computer eyeglasses. Even contact lens wearer sometimes will need computer glasses over their contacts.

Only when their eyes can clearly focus at the plane of the computer screen can the patient experience relief from the fatiguing effects of Computer Vision Syndrome.

Suggestions That Can Help Reduce Some of the Effects of CVSS: Glare screen filters may be helpful for some people, but they will not solve your computer vision problems because they only affect glare from the computer screen, not the problems caused by the constant refocusing the eyes must do when working on a computer. An anti‑reflective coating (AR Coat) on the lenses of glasses will reduce the glare coming at you and from behind you that causes eyestrain.

Proper lighting can reduce eyestrain and glare. Glare is created by glare on walls and other surfaces, reflections from the computer screen, bright light coming in from outside, and bright light inside. To decrease light and reflections from external light, close drapes or blinds. When using computers, lighting should be about half of that used in most offices. Using fewer light bulbs or florescent bulbs or use lower intensity bulbs can reduce glare caused by overhead lighting.

Take a 10‑15 minute break every hour to reduce eyestrain. Look away from the computer screen every 10‑15 minutes and focus for 5‑10 seconds on a distant object outside or down the hallway or get up and take a short walk. Everyone tends to stare at the computer and blink less, about 5 times less than normal, according to studies. Staring and decreased blinking dry the eyes out. Taking frequent breaks allows normal blinking and better wetting of the eyes. Office buildings tend to be dry environments that also reduce tearing. If you are experiencing significant dryness, ask your eye doctor about artificial tears or eye drops that you can use during the day. By modifying your work area, you can reduce eyestrain and other effects of CVS. If you need to look back and forth between the printed or written page and the computer, eyestrain can occur. Place written pages on a copy stand next to the monitor. Properly light the copy stand. Adjust your workstation and chair to the correct height. Purchase ergonomic furniture to assure proper screen locations and posture. Poor ergonomic setup is a cause of head, neck, shoulder, and back pain.

Place your monitor directly in front of you, not off to one side. It should be about 20 to 26 inches away from you. Make sure your monitor is just right for you, not too high and not too low. You may need to raise or lower your chair. If you reposition your chair, keep in mind that your arms should be parallel to the floor when you type, and your feet should be flat on the floor or on a footstool. Finally, maintain good posture at your desk: keep your back straight and your shoulders back. Adjust the contrast between the background and the characters on the screen by adjusting the brightness on your computer screen.

Computer User Questionnaire

Do you notice any of these visual symptoms? Please rate the following symptoms by underlining the appropriate description:
 

If you feel any of these symptoms, show this questionnaire to your eye care specialist. You will benefit from a new type of eyeglasses that can eliminate the symptoms and dramatically improve your comfort level when working on a computer. These eyeglasses are specifically for computer users. For more information go to:

http://www.mdsupport.org/library/cvs.html

EDITOR's NOTE: In our next issue we will print the rest of this article about "Computer Glasses".

Branch News

Christchurch Branch end of year dinner

From Kaye Newton

About 27 people gathered at the Foundation on Saturday 29th November to enjoy an informal meal together. It was pleasing to welcome three new members to their first Retina gathering. I am sure they found it worthwhile and I know at least one lady had picked up some useful information from talking to others. No‑one seemed to be in a rush to leave. Thanks to the Christchurch team of Pip, Peter, Jean and Petronella who work well as a team.

Otago/Southland Branch

From Helen Adams

The Otago/ Southland branch of Retina New Zealand held a very

successful and well‑attended end-of‑year function at the Belleknowes Golf Club in early December. More than 30 members and friends attended, and as well as enjoying a barbeque lunch, all present took the opportunity to pay tribute to founding member June Ombler, who is moving to Wellington in February. June's enthusiasm and energy as well as her commitment to furthering the goals of Retina, were acknowledged by all, and all good wishes were expressed for her move to Wellington. One of the early members of Retina, Dawn Cole, presented June with a gift as a token of our appreciation.

Photo: A group enjoying the barbeque lunch. From left; Bill and Margaret Ross, Margaret Pollock, Ethel and Albert Weiringa.

Photo: June Ombler opening a special gift presented to her by Dawn Cole. Also in the photo are from left Olivia En, Helen Adams and Gillian Adams.

Letters

FROM: Heidi L. Rehm, Ph.D

Laboratory for Molecular Medicine

Harvard‑Partners Genome Centre

001-617-768-8513 (fax)

hrehm@hms.harvard.edu

WANTED: People with Norrie Disease and Related Disorders

Dr Katherine Sims and I have been studying Norrie disease for many years. We would like to further our studies by collecting more clinical information from people with Norrie disease or other eye disorders caused by the Norrie gene.

Participation would involve completing an information collection form that collects medical and family history. If you agree, we may also contact you in the future to obtain additional or updated information and to inform you of other studies on Norrie disease.

We hope that the results of this research study will help us better understand the characteristics of Norrie disease and the possible progression of the disease in affected individuals, and this information may benefit persons with this condition in the future.

If you are interested, please send me your mailing address. I will mail these forms to you along with stamped, addressed envelopes to return them.

If you have other family members or contacts with Norrie disease, we hope that you might tell them about the study and ask them to contact us if they wish to participate.

Thank you in advance for considering this request.

FROM: Liz Wilkin

Email liz.wilkin@paradise.net.nz

Do you know anything about microcurrent stimulation and/or

acupuncture used around the eyes and at other points on the body to stimulate circulation to the eyes, thereby reversing or retarding progression of macular degeneration and other retinal diseases.

I understand this treatment is commonly used in the U.S. Is it available or used here in NZ?

I look forward to hearing from you.

EDITOR's NOTE : A query to Dr Rachel Barnes of Retina's SMAB gives the following answer ‑ "As far as I know the treatment is not available in NZ. It would however fall into the realm of alternative rather than conventional medicine in any case. It is not an acknowledged treatment for AMD".

Kiwi Albinism Interest Group

FROM: Allan Little

Phone (06) 368‑8484

Email vision@inspire.net.nz

White hair, pale skin and impaired vision are characteristics of Albinism. There is a role for a "kiwi" Albinism interest group which informs and reassures the public on matters such as skin protection, low vision and successful living. This collaborative initiative will complement the excellent work of Retina NZ.

Notices

Adaptive Technology Computer Courses Update

From Harris Rosensweig, Adaptive Technology Projects Manager, RNZFB

Computer training is now readily available for members of the Royal New Zealand Foundation of the Blind through our state‑of‑the‑art training facilities in Auckland and Newtown, Wellington. No prior computer experience is necessary! We do ask that you be: a registered member of the Foundation and can type without having to look at the keyboard. However, typing instruction on a computer keyboard is also available. Since April 2002 in Auckland and mid‑2003 in Wellington, the RNZFB has been providing centre‑based training to its members. The classrooms, which can accommodate up to 8 people at a time, are each staffed by two knowledgeable instructors well‑versed in computers, adaptive technology, and tuition that is tailored for people of all ages who are blind or vision‑impaired. We have both short (2‑3 days in length) and longer term (multi‑week) courses teaching you: how to send and manage electronic mail, how to surf the Internet and use the Internet to find just about anything, basic computer maintenance, word processing, and much, much more. The environment is relaxed and supportive with the tuition being mostly self‑paced.

The schedule for the next group of classes to be held in Auckland and Wellington is:

*Multi-week courses

May 17, 2004 to July 22, 2004

August 30, 2004 to November 4, 2004

* Short courses (topics to be announced)

April 19, 2004 to May 7, 2004

August 2, 2004 to August 20, 2004

If you are interested in joining us at Braille House in Newtown or Awhina House in Auckland for one of our exciting training courses, please phone one of the following people:

* Auckland: Penny Hieatt ph. 09 355‑6915 or Maria Williams

09 355‑6995

* Wellington: Devon Easton ph. 06 350 2543 or Tom Smith

04 380 2141

* or phone 0800 24 33 33.

New Society Post Office Box Number

Will all members and those who read this newsletter please note that as from 1st February 2004 our new post office box number is: P.O. Box 17‑242, Wellington 6033.

This will be regularly listed in the cover of the new print version of this newsletter.

Retina Peer Support now has its own 0800 Freephone Number

For help and advice on living with an eyesight problem,why not talk to one of our Peer Supporters on our new direct dial 0800 233 833 FREEPHONE number or Elizabeth East, Peer Support Co-Co-Ordinator on (04) 299 1801. We welcome new members, including people with some sight loss, who are not eligible for Foundation membership.

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 Zealand's peer supporters, 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 Hotlin

ask for Dr Andrea Vincent 0800 476 123

Wellington Genetic Hotline 0508 364 436

Christchurch Genetic Hotline 0508 364 436

(South Island callers ask for

Dr Caroline Lintott)

CHANGE OF POSTAL OR EMAIL ADDRESS:

Would any person who changes their postal or email address, please advise the National Secretary, Retina NZ Inc., of your change of address.