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HomemifeatureMacular Degeneration Requires Vigilance

Macular Degeneration Requires Vigilance

By now, we are well aware that Macular Degeneration (MD) is the leading cause of blindness in Australia, affecting central vision. MD is primarily age related and most frequently affects people over the age of 50. One in seven people over the age of 50 are affected by the disease and the incidence increases with age. It is sometimes referred to as Age Related Macular Degeneration or ‘AMD’.Although, thanks to the Macular Degeneration Foundation, Australians are now much more au fait with the disease, the message will continue to be spread through Macular Degeneration Awareness Week from 24 to 30 May.And one messenger is 83 year old medico Professor Helen Beange who is legally blind due to AMD.

Professor Helen Beange has a simple message aimed at both the general public and the medical profession.

To the public she says that the macular should be checked regularly, particularly for those over 50, the proper diet should be observed and she strongly advises the public to quit smoking.

To medical professionals she says; be in tune with patients and their concerns and carefully listen to patients, to read clients and pick up the threads of concern that can lead to early detection and possible saving of sight.

Prof. Beange recalls that the following year, she was admitted to hospital suffering from pneumonia and several days after her admission she says she woke up and just couldn’t see

Professor Beange’s story is extraordinary in the sense that her symptoms were initially dismissed by her and then on another occasion by doctors while in hospital. In this case had it not been for her eventual persistence in following up on the symptoms, she would not have been treated for MD when she was.

This story is all the more extraordinary because Prof. Beange is a medical practitioner herself, having worked, supported and advocated for people with disabilities throughout the 43 years of her working life. Now, legally blind and in her 80s, she is still a Clinical Professor at the Sydney Medical School at the University of Sydney.

The Helen Beange story is one of true inspiration and selfless service.

Professor Beange’s Story

She graduated in medicine from Sydney University in 1948 and “did what you did in those days and worked for a few years in various hospitals and as a locum and then ended up as an assistant in general practice in Wagga”.

That’s where she met her husband Guy, a highly decorated naval aviator, who she married in 1953 and being the good wife, Helen Beange retired from medicine.

“I did what women did in those days and concentrated on being a wife and mother, so from then onwards I moved around with my husband, but when we got back to Sydney in 1966, I returned to medicine after having had my sixth child (five boys and one girl)”.

Professor Beange recalls going to the Grosvenor Hospital and Diagnostic Centre where she began working in developmental disability medicine.

Back then, Prof. Beange told the Medical Journal of Australia that the medical officers were at the fringe of a revolution in genetics, constantly learning about recently discovered syndromes and how to identify these as the underlying causes of the conditions in their patients.

Becoming interested in exercise and nutrition, she decided to investigate how exercise could assist people with a disability.

After obtaining a Master of Public Health, Royal North Shore Hospital (RNSH) allowed her to start a health promotion clinic for adults with developmental disability which included a dietitian and an exercise physiologist.

Of their involvement, Helen said at the time “it was obvious to me that my colleagues, using nutrition and exercise, improved health faster than I did.” She describes this time as one of “fanatical adherence to the philosophy of normalisation – all people with disabilities should live in the community, whatever their special needs, and participate in all community activities”.

After a career spanning more than 40 years, Helen retired from the RNSH at the age of 65 and started working as a visiting Medical Officer in a large NSW institution for people with intellectual disability. Helen set up a successful program concentrating on the nutrition and diet of the residents and as a result, a policy for screening nutritional status of all people with intellectual disability in residential care in NSW has been established.

She was also founding chair of the NSW Association of Doctors in Developmental Disability (ADIDD) and was later one of the founders of the Australian Association of Developmental Disability Medicine. She has been a pioneer in epidemiological research of people with disabilities in Australia and has been a constant activist for the rights of Australians with a disability.

Disappearing Vision

According to Prof. Beange, “It was about 2005 when I discovered there was a bit of a hole in my visual field.

“I was at the gym and reading whilst jogging on treadmill and a black hole appeared in my visual field. I got used to it and learned to live with it for a few days. However she called her ophthalmologist who referred her to a retinal specialist straight away.

Prof. Beange’s retinal specialist diagnosed MD and began photodynamic therapy which preserved her vision for a while.

“Ultimately, the useful vision in my right eye was lost. I was really using my other eye for my fine work such as reading, driving and seeing patients.”

Prof. Beange recalls that the following year, she was admitted to hospital suffering from pneumonia and several days after her admission she says she woke up and just couldn’t see.

“I knew what was wrong with me straight away because I had been warned, but you still don’t believe these things. I told the hospital staff, but nobody took any notice of me.

“To them I was an old lady in hospital and their response was ‘oh well, old people often have something happen to them when they’re in hospital’.”

Prof. Beange was insistent and finally got hold of the doctor in charge of the ward who declared that geriatric patients who come to hospital do suffer from worsening vision and said there was nothing to worry about and that it would come good.

“I insisted that I needed some urgent help and I persuaded him to call my ophthalmic surgeon who said I had to see him immediately. He found that yes, I had lost the sight of the good eye due to MD and this was before the advent of Lucentis therapy so there was really nothing he could do.”

At age 83, Prof. Beange had to organise for someone else to treat her many patients and that’s when she was finally forced to retire. To make matters worse, three months after being diagnosed as legally blind her husband passed away.

Vigilance Is Key

According to Prof. Beange, treatment for Wet MD has changed radically in the last three years with a new treatment now available which can save sight. One of the key aspects of MD is the critical nature of early detection. The sooner treatment is sought the greater the chance of saving sight. The MD Foundation has worked with many people who have lost sight because they dismissed the symptoms as “just a part of getting older”.

In the case of dry MD there is presently no treatment. However diet and lifestyle are critical to reducing the risk and slowing down the progression of the disease.

In the last few years a genetic link to MD has been established and it is even more important to know the family history and also tell family members if you have MD so they too can be tested, know the symptoms and undertake risk reduction measures.

Prof. Beange has managed to maintain quality of life and to continue to be independent with her wonderful “can do” attitude to life, her enthusiasm and commitment to her work and by using low vision aids and technology to assist her with everyday tasks.

“For a very long time I resisted these aids because I thought nothing couldn’t help me. People just need someone to gently tell them that these aids are useful and are necessary. These aids and software have helped me incredibly – I can now still edit a newsletter and assess the work of medical student via email”

And Prof. Beange has a message for the public: treatment for wet MD has improved greatly, and if detected early enough, can save sight.

“This is a marvellous development and if I had developed my disease two years later, I could still see”.

Secondly, even if you have MD that doesn’t respond to treatment, life does not stop. “There are many things you can do. I have been going to the gym three days a week, working on my computer and even going to the movies, although I cannot see in detail all that well,” says Prof. Beange.

“And of course, you should have regular eye check-ups, especially if you are related to anybody who’s had sudden loss of sight or has had MD. Diet is also very important – make sure you have plenty of green, leafy vegetables and fresh fruit.”

“Also, do not grow obese or overweight, keep physically fit and definitely do not smoke.”

Of her career, Prof. Beange said: “I am lucky to have been present at the beginning of a new branch of medicine. I hope that advances in genetics will eventually lead to a therapeutic revolution for people born with intellectual disability.”

But she underlines the fact that when it comes to saving your sight from macular degeneration, vigilance is the key.

Macular Degeneration: The Facts

What is Macular Degeneration (MD)?

  • The macula is the central part of the retina, the light sensitive tissue at the back of the eye.
  • MD causes progressive damage to the macula resulting in central vision loss.
  • Central vision loss can affect your ability to read, recognise faces, drive and see colours clearly.
  • Early detection of MD and seeking treatment immediately is vital in saving sight.

How many Australians have MD?

  • MD is the leading cause of blindness and severe vision loss in Australia.
  • MD is responsible for 48 per cent of severe vision loss in Australia.
  • One in seven Australians over the age of 50 is affected by MD and the incidence increases with age and is often called Age- related Macular Degeneration or AMD

What’s the difference between Wet and Dry MD?

  • Dry MD results in a gradual loss of central vision.
  • Wet MD is characterised by a sudden loss of vision and is caused by abnormal blood vessels growing into the retina.

What are the symptoms of MD?

  • Difficulty in reading or doing any other activity which requires fine vision.
  • Distortion – straight lines appear wavy or bent.
  • Distinguishing faces becomes a problem.
  • Dark patches or empty spaces in the centre of one’s vision.

What are the risk factors for MD?

People over the age of 50, smokers and those with a family history of MD are most at risk of developing the disease.

What can you do to reduce your risk?

  • Have your eyes tested and make sure the macula is checked.
  • Don’t smoke.
  • Keep a healthy lifestyle. Control your weight and exercise regularly.
  • Eat a healthy, well-balanced diet, eat fish two to three times a week, eat dark green leafy vegetables and fresh fruit daily and eat a handful of nuts weekly and limit your intake of fats.
  • In consultation with your doctor, consider taking an appropriate supplement for macula health which could include a zinc and antioxidant supplement; a lutein supplement; or a high strength lutein, zeaxanthin and concentrated omega-3 supplement.
  • Provide adequate protection for your eyes from sunlight exposure, particularly when young.

What treatments are available for MD?

Current Wet MD treatment relies upon early detection. With the changed treatment landscape in ophthalmology for wet AMD and the development and use of lucentis (ranibizumab) for AMD in the last three years has meant that sight can now be saved. However, early detection is critical in order to save sight. There is no treatment for Dry MD.

What is the MD Foundation?

The MD Foundation is a not-for-profit organisation which aims to reduce the incidence and impact of Macular Degeneration in Australia. The Foundation’s Patron is Ita Buttrose AO. The Foundation’s objective is to provide education, awareness, research, and support services; as well as be the voice of the MD Community.

Medical Journal of Australia, Volume 181 Number 11/12, 6/20 December 2004