Coping with the trauma of sight loss
WHEN Keena Holt was told by her specialist that she would lose her sight if she didn't have expensive treatment, she didn't know what to do.
But for her son Paul there was no debate. "He said, 'I am ringing the hospital, you are having the treatment'."
The Holts had just sold the family Golf because her husband could no longer drive, and so had the money necessary to pay for the treatment.
But the 18,000 a year who lose their sight due to Age-related Macular Degeneration (AMD) may not be in such a position. They do not have the thousands of pounds needed to pay for the drugs to save their sight.
Despite being the leading cause of sight loss in the UK, AMD has only really been brought into the public glare due to former Halifax MP Alice Mahon's personal fight for sight-saving drugs. "I had never heard of it until I had a problem in my left eye about five years ago," says Mrs Holt, 73, of Scholes, near Cleckheaton.
"I thought my new contact lenses were playing up, but the optician told me I'd had a bleed at the back of my eye and doctors confirmed there was nothing they could do for me. They gave me lots of leaflets about AMD, but people over 60 should be made aware of this disease before they get it."
Mrs Holt had no further problems and learnt to live with the loss of sight in her left eye, but then in June last year, she suddenly went totally blind. "I thought we had had a power cut; I just couldn't see anything."
She went to A&E where doctors told her she had suffered another massive bleed, this time behind her right eye and told there was nothing they could do for her until the blood dispersed.
"I went back to the hospital a month later and they said the same thing and gave me an appointment for March 7."
But then a friend gave her a cutting from the Yorkshire Post about a drug treatment for wet AMD being carried out at the Yorkshire Eye Hospital, so she went along.
"Mr Shafiq Rehman said I had a very aggressive form of wet AMD and if I didn't have treatment immediately I would lose my sight. All I thought was that I would end up in a home and so would my husband Leslie as I'm his carer. Luckily, we had just sold the car and so could afford the treatment which was 700 a time plus the consultations. But other people don't have that sort of money."
Mr Rehman tried a new drug treatment commonly used to treat bowel cancer patients – Avastin. It is a similar drug to Lucentis, which Mrs Mahon is fighting for, but cheaper and is not currently licensed for the treatment of eye conditions.
None of the drugs is approved by the National Institute of Clinical Excellence and therefore not many Primary Care Trusts will fund their use.
Unlike Mrs Mahon, Mrs Holt was not even told there were drugs which could help save her sight. Two weeks after her third injection of Avastin, she saw an improvement in her sight, which she thinks is back to 50 per cent. "I will never have perfect vision, but it is enough to help me live a normal life and look after my husband. People should be made aware of this condition and there are things that can be done to help them if they can pay for it, but I am angry that the NHS won't pay for the treatment."
Mr Rehman said: "NICE is currently looking at Lucentis and is likely to make its findings known by the end of the year. I think they will find it very hard not to approve it.
"The main thing for people in their late 50s and over is to have regular check ups with their optician and report any changes in their vision."
www.yorkshireeyehospital.co.uk
What is AMD?
There are two types of age-related macular degeneration or AMD, usually referred to as "wet" and "dry". "Dry" AMD is the most common form of the condition. It develops slowly causing gradual loss of central vision. There is no medical treatment for this type. However, aids such as magnifiers can be helpful with reading and other small detailed tasks.
"Wet" AMD results in new blood vessels growing behind the retina, this causes bleeding and scarring, which can lead to sight loss. "Wet" AMD can develop quickly and sometimes responds to treatment in the early stages. It accounts for about 10 per cent of all people with AMD. AMD usually involves both eyes, although one may be affected long before the other. At the moment the exact cause for AMD is not known. However, there are a number of risk factors which have been identified.
Age
Gender – Women seem more likely to develop macular degeneration than men.
Genetics – There appear to be a number of genes which can be passed through families which may have an impact on whether someone develops AMD or not.
Smoking – Smoking has been linked by a number of studies to the development of macular degeneration. It has also been shown that stopping smoking can reduce the risk of it developing.
Sunlight – Some research suggests that lifetime exposure to sunlight may affect the retina. Wear sunglasses to protect the eyes.
Nutrition – Research suggests that some vitamins and minerals can help protect against macular degeneration.
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Friday 10 February 2012
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