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RETINA E‑News |
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No 9 April 2009
Seeking a cure for Retinitis Pigmentosa, Macular |
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In This Issue
Contact Us: Fax: 011 622 6277 Share call 086 059 5959 We’re on the web: |
RETINA E-NEWS to YOUDIS-CHEM RIDE FOR SIGHT
15th February 2009Retina South Africa would like to thank Dis-Chem the naming sponsor, secondary sponsors, volunteers and participants for their support of the hugely successful 21st Ride for Sight. Nearly 5000 cyclists rode to victory in the fight against retinal blindness. The winner of the Men´s trophy was Juan van Eerden and Cherisse Taylor won the ladies title. Thanks to co-organisers Springs Wheelers, Alberton Amateur Radio Club, Red Cross Benoni and all the participating Service Clubs and Think Bike for marshalling as well as Ekurhuleni Protection Services for traffic control. Thanks to secondary sponsors Vita-thion, Pizbuin, Cellfood, Spirulina, Tour De Frans Cycles, Powerade, Wilderness Safaris, Winning Time, Cycle Events, Roadway Logistics, Venter Trailers, Mongoose Cycles, MTN, Bar One (Nestle), Continental, Liquor City, Bolle Sunglasses, Clover, Imperial Truck Rental, Forever Resorts, Cathedral Peak Hotel, Kenwood, Indaba Hotel, Matopi Lodge, Rock Lodge, Tempest Car Hire, Emperors Palace, Johnson & Johnson, Designer Group, Birchwood Hotel, Villa Rostrata, VW Heidelberg for lead vehicles, Towers Pick n Pay and Beachcomber Tours. The Ride for Sight continues to be one of our most important special events to raise funds for our research projects. SPECIAL FOCUS ON AMDLUCENTIS LAUNCHED IN SOUTH AFRICALucentis, the Anti VEGF injection that has shown remarkable results in slowing the degeneration in Wet AMD, was launched at the annual Ophthalmology Congress (OSSA) held in Durban at the beginning of March. Age Related Macular Degeneration is one of the leading causes of vision loss in patients over the age of 50 in the developed world. It is more common in Caucasians and causes loss of precious central vision. Early changes in the retina - the build of deposits called Drusen - causes Dry or non - neovascular AMD. This may occur years before any vision is lost and early diagnoses may lead to early intervention. In about 10 % of AMD cases new blood vessels form at the back of the retina [neovascularisation] which leak fluids and blood and cause sudden and dramatic vision loss. Lucentis is injected into the eye to inhibit the action of VEGF- the growth factor that promotes the growth of these rogue blood vessels. In the ANCHOR study 90% of the patients receiving Lucentis lost less than 15 letters in Visual Acuity compared to 65% of the patients who received Photo Dynamic Therapy [1]. Lucentis has been shown to effectively restore the anatomical structure of the diseased retina [2]. The cost of Lucentis is the only drawback but patients should discuss possible financial assistance from Novartis, the South African distributor, with their Eye Specialist. The importance of early treatment is highlighted in the interview below. |
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An Amsler grid is vital for AMD patients! |
Patients with early AMD should check their vision regularly with an Amsler grid and see their Eye Specialist urgently if they suspect a sudden noticeable change in their vision. References:[1] ANCHOR study Ophthalmology 2009 - Copy available on request ED [2] Consensus Document on the clinical practice Guidelines for the Management of Wet AMD - This excellent document was written by 13 South African Eye Specialists with a particular interest in the retina. Anyone in the Eye Care Industry who would like a copy should contact: tamu.dube@novartis.com, or telephone 011 929-2433. |
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Tamu Dube of Novartis South Africa (Pty) Ltd states |
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STOP Press . . . |
STOP PRESSResearchers at the University College of London announced this week (19th April) progress towards the use of stem cells to replace damaged retinal cells. . . . More in the next issue of the eNews. PROFESSOR PAUL MITCHELL ON AMDProfessor Mitchell is Professor of Ophthalmology at the University of Sydney, Australia. He was one of the key note speakers at the OSSA Congress and took time out from his busy schedule to talk to the Retina eNews. |
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This Anti- VEGF treatment is a breakthrough! |
Q: Why is this new anti- VEGF treatment so important? PM: The new anti - VEGF treatment is in fact a breakthrough treatment for Age related Macular Degeneration. We know that VEGF - Vascular Endothelial Growth Factor is up-regulated in AMD and contributes to the development of the neo - vascular stage of AMD. The VEGF is an important driver of the development of new blood vessels that cause damage to vision. Lucentis blocks all ISO - forms of VEGF A, the main form of VEGF in AMD. Earlier treatments such as Macugen blocked only one form of VEGF. The Anti - VEGF is only effective close to the site of action of the VEGF and so we have to administer it as an injection into the retina. It also has to be done on a regular basis while the disease is active. The search is ongoing for longer lasting agents that will maintain the protective action of the anti - VEGF drugs but we have no answers as yet. Q: How long is the treatment likely to last? PM: The treatment is different for each patient but during the Anchor treatment trials many patients maintained stability for 2 years after the treatment. Around 1/3rd to ½ of patients needed treatment for more than 2 years. A typical case would require 6 to 7 injections in the first year and around 3 to 4 injections in the 2nd year. EVERY patient is different so patients need to be followed up very closely and monitored. Q: Avastin, the drug that was developed for colorectal cancer is being used off label to treat wet AMD. Why should patients now be treated with Lucentis? PM: Avastin seems to work and it is much cheaper than Lucentis, but we don´t know that it works as well as Lucentis. Comparison trials are underway and we hope to have some of the answers by the end of 2010. The safety issues also need to addressed. |
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Avastin stays in the system for around 3 weeks compared to one day for Lucentis. The increased risk for strokes or cardio vascular disease is unknown for Avastin but we know that Lucentis is very safe to use. Even so, treatment with Avastin is better than no treatment at all. In Australia Avastin is not registered for the treatment of AMD but Lucentis is now accepted as the standard of care for wet AMD. One of the most important factors in the success is getting treatment as soon as possible to maintain as much independence as possible and to maintain a normal lifestyle such as reading, driving etc. |
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Optometrists need to be aware that new CNV in AMD are as urgent as a retinal detachment! |
Once scarring of the retina is present the anti VEGF treatments will have little effect. In the beginning we tried to treat cases with old retinal damage but now we are seeing very good results in new CNV cases. We need to educate all eye care practitioners and in particular optometrists of the sense of urgency of referral. They see the patients first and need to be aware that a new CNV should be fast tracked for an appointment with an appropriate Ophthalmologist with the same urgency as a retinal detachment. New blood vessels can grow and double in a few weeks. The patients need to be aware that the treatment is also long term and that the need to be closely monitored for around 2 years. This means a commitment from both doctor and patient to achieve the good results that are possible with anti VEGF treatment. |
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Two of the most important modifying factors in AMD are smoking and nutrition
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Q: What is your message for patients with dry AMD? PM: We need to change the way we classify AMD. In early AMD you can have large Drusen for up to 10 years before any visual loss begins. This early AMD can then become either Wet [CNV] AMD or Dry - Geographic Atrophic AMD. Why - we don´t know that yet, but we do know that early intervention can help. We cannot change the genes that we inherited and we know the importance of the genetic factors in AMD, but we can do something about the modifying factors. The 2 most important of these are Smoking and Nutrition. We are what we eat and we know from the AREDS study that antioxidants are important. We also know from subsequent studies that Lutein [*found in green leafy vegetables- ED] and Omega 3 fatty acids [* found in oily fish- ED] and foods with a low Glycemic Index [* such as complex Carbohydrates- ED] are an important part of your diet or dietary supplement. These do slow the rate of progression of the condition. What is also important is the legacy effect - the benefits of the AREDS supplements were continued long after the supplements were discontinued. |
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Q: You mentioned genetics. Can you expand on this. PM: There are a number of genes that have been linked to AMD. The 2 most important of these are the Complement Factor H gene and the LOC gene. People who have 2 of the alleles are also worse off than those with only one allele. With the advances in micro array technologies we hope that in a few years we will be able to test for these genes in families with a history of AMD. If you know you are at high risk you can be carefully monitored, start supplements or even be treated earlier. We are also finding that there are some genes that would seem to offer some protective factors. In the future we CAN reduce people´s risk of developing AMD.
Prof. Mitchell [left] is pictured with Prof. Ramesar, co- chair of the Retina South Africa Scientific Board and Prof. Tony Murray who has just retired from the Board. Prof. Ramesar gave an update of the UCT Retinal Degeneration project at the Congress. |
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ECT treatment trials for Dry AMD |
TREATMENT TRIALS FOR DRY AMDNeurotech recently announced exciting results of a phase 2 clinical trial to treat dry AMD [Geographic Atrophy]. Until now there has been no treatment for this more common form of AMD. The treatment consists of the implantation of an Encapsulated Cell that contains genetically modified cells that secrete Ciliary Neurotrophic Growth Factor [CNTF] in a controlled and continuous dose. The study showed that at 12 months 96,3% of patients receiving the treatment lost less than 3 lines of vision compared to 75% who were receiving a placebo. The strong trend in VA stabilization was preceded by observation of an increase in retinal thickness measured by OCT [Ocular Coherence Tomography] as early as 4 months after implantation. Other trials are underway or are being planned to treat wet AMD and other retinal conditions such as Retinitis Pigmentosa. ECT delivery of anti VEGF drugs will overcome the trauma of monthly intraocular injections - at present the only way of delivery to the retina. [Copy of article available on request - ED] |
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Break out your running shoes! |
NEW LOOK AT FACTORS INFLUENCING AMDAMD is a complicated condition and known risk factors include genetics, smoking, nutritional factors, UV exposure, etc. New studies have also shown that higher doses of vigorous exercise may lower the incidence of the risk of AMD. Researchers found that people who ran 2km to 4km per day reduced their risk of developing AMD by 19% while those who ran more than 4km daily had a reduced risk of 42% to 54%. Another study showed that males who ran more than 10km daily also had a reduced risk of developing cataracts. |
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Don´t self medicate - speak to your eye specialist! |
Another study in the Archives of Internal Medicine showed that medicate- speak to women who took a combination of Vitamins B6 and B12 had a 34% reduced risk of developing AMD and a 41% reduced risk of the your eye advanced form of the disease. Self medication is not a good idea specialist! please speak to your Eye Specialist before starting any supplementation and speak to your General Practitioner before you break out your running shoes! See full report on the AMD Alliance website www.amdalliance.org. |
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Do you need vision rehabilitation? |
VISION REHABILITATION – By Gail CillieWhen diagnosed with a retinal degenerative disorder, such as Macular Degeneration, Retinitis Pigmentosa, Usher Syndrome or an allied condition, feelings of despair, fear and concern for your future often overwhelm you. How do you face a future of diminishing eyesight, which in most cases leads to loss of sight and blindness? Vision rehabilitation is the answer to ensure that you can remain productive and lead as independent a lifestyle as possible. It is most important that a program of vision rehab is implemented as soon as possible after diagnosis. This is recommended when sight cannot be corrected back to normal through prescription spectacles, surgery or medication. Sometimes prescription spectacles are prescribed to enhance the remaining vision. First steps to take: Know the name of your eye disorder; understand what part of the retina is affected and how this impacts on the manner in which you see. Are there other factors that contribute to not seeing clearly, such as glare, poor adaptation to dim or bright light. Is there a loss of central vision or a loss of side vision or both? This process will help you to identify your best view path - when do you see, where do you see and how well do you see. Vision that is lost is lost. Do not focus on what one cannot see, but rather on what one can see. Eccentric viewing - learning how to use your best area of best vision can help people with central vision loss. The rehab program usually begins with a consultation with a low vision practitioner or mobility and orientation instructor. An assessment and visual evaluation will be carried out to determine the level of vision function, assess the areas where difficulties are experienced at home, in the workplace, performing daily living skills, as well as how well an individual is able to orientate themselves to the environment they find themselves in and their ability to move around independently. The low vision patient should be allowed to express their goals and dreams and ways should be explored on how best these can be achieved. The assessment will define the individual´s need to use low vision assistive devices. These might be optical or non optical or both. Devices that magnify or enlarge are known as optical devices. Optical devices come in different optical strengths, can be illuminated, can stand or be hand held. Non optical devices are anything that does not have a lens eg. White cane, sunglasses, guide dog, signature guide, khoki pens, talking cell phones are just a few of the devices available, that can help you to perform a specific task. Low vision assistive technology compatible with computers and TV screens greatly empower low vision people not only in the work place, but also at home to read and write. Embarking on a program of vision rehab will empower you to utilize residual vision to the optimum, enabling you to perform tasks and to live life to the fullest. For more information, to find out about low vision optometrists, low vision assistive devices and technology contact Claudette Medefindt at Retina South Africa´s National Office or Gail Cillie [Eastern Cape Branch] on 041 365-5947. |
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Visual hallucinations in advanced vision loss are fairly common |
COMPLICATIONS OF AMDThe silent and often ignored complications of advanced vision loss may include depression, sleep deprivation or visual hallucination [Charles Bonnet Syndrome]. These can be as devastating and frightening as the vision loss itself. Patients are often reluctant to speak to family members or eye care practitioners about these complications. We would like to encourage patients experiencing any of these to seek help to be able to cope with these complications. Coping techniques may include breathing exercises for stress and depression and visualisation exercises to control visual hallucinations - which are thought to be the brain´s interpretation of incomplete messages from damaged retinas. |
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Congratulations to Joe Hollyfield!! |
FITTING HONOR FOR PROFESSOR JOE HOLLYFIELDDr Joe G Hollyfield, one of the world´s most respected experts in Age related Macular Degeneration was recently named as the inaugural appointee of the Llura and Gordon Gund Endowed Chair in Ophthalmology Research at the Cleveland Clinic, Ohio. Joe, who has devoted much of his academic life to the understanding of AMD and the search for treatments, has served on the Scientific Board of the American Foundation Fighting Blindness since the mid 1980´s and is co-chair of the Scientific and Medical Advisory Board to Retina International. We are proud to have him as a member of our own Scientific Advisory Board. Gordon Gund is one of the co-founders of the American Foundation Fighting Blindness.
Joe is pictured with Mary - his wonderful wife and scientific partner. They visited South Africa in 1992 for the Retina International Congress and again in 2005 when he lectured to patients and eye care professionals around South Africa. Joe and Mary have always given Retina South Africa the most wonderful support and assistance. He deserves this honor and our most sincere congratulations. AMERICAN IDOL SCOTTScott MacIntyre, a young talented musician who has severe vision loss from Leber Congenital Amaurosis (LCA), has made it to the final 12 on American Idols. See Scott on American Idols on the MNET Series Channel. |
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Interesting Links |
OBITUARYJohn Foster Greenwood one of the founding members of the KwaZulu Natal Branch died recently in the Cape. John was 83 years old but lost none of his irascible charm and sharp mind. Condolences to the family. SMS CAMPAIGNA sincere thank you to all who supported our SMS fundraising campaign. If you would still like to contribute please . . .
SMS the word VISION to 38267 SMS costs R10 · premium rates · free SMS´s do not apply · all prices include VAT. All funds raised from this project will go directly to fighting blindness research projects. Thank you for your support.
The production and distribution of this newsletter was sponsored by Novartis Ophthalmics.
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NPO no 003-184 |
Retina South Africa needs your help to Fight Retinal Blindness |
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