Recently diagnosed with macular degeneration - Macular Society

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Recently diagnosed with macular degeneration

susanQ123 profile image
6 Replies

I was really surprised, not in a good way when I was told at a routine eye test that I had macular degeneration, the dry sort.

The optician told me to go home and not worry about it as it was early days. I did go home and realised I was in shock - I couldn't stop thinking about it, I couldn't even read up on it.

I,m better now since I found this site, but I'm wondering if I should have been referred . I also take supplements in hope they slow the progression of this disease.

My sight as far as I can tell is the same as it always has been, apart from a dark patch on the ceiling when I'm in bed.

I hope I don't sound too much of a Mardy bum, when some of the posts are so much worse.

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susanQ123
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6 Replies

Hi susanq, yes it's definitely a shock and you need time to process. sending you a hug x

I don't have dry md but it always surprises me to read from so many that opticians just send them away. I understand the Areds2 is a proven help and also it must be prudent to be told how to check dry hasn't changed to wet by using the amsler grid.

I reccomend you contact the Macular Society 0300 3030 111 who can give you support and advice. their website is good too. This site will give you a great sense of not being alone. Best wishes going forward x

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear susanQ123,

I am sorry to read of your recent diagnosis.

Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest.

The dry type is primarily related to the ageing process and is more common in individuals over the age of 55 years. The deterioration is generally slow and over a period of months and years. However, how fast and how far the condition deteriorates is variable between individuals. There is currently no treatment for it, however, we talk about the importance of lifestyle considerations which can hopefully have a positive impact on eye health and potentially slow down the deterioration a little. Therefore, for instance, exercise is good for eye health in addition to general health. It is important to try and maintain a healthy weight, keep blood pressure under control and avoid smoking. Research indicates that being careful with regard to nutrition can also potentially have a positive impact on eye health as well as general health. It is also important to consider protecting the eyes from the harmful effects of the sun.

Optometrists do not generally refer individuals to an ophthalmologist for the dry type.

10-15% of people with the dry type go on to develop wet AMD in the same eye. Therefore it is important that if an individual does notice any sudden eye changes, that they act rapidly and go to the optometrist so that they can check behind their eyes. Alternately, they can attend the emergency eye clinic usually located within the hospital. If the optometrist identifies possible wet, then the Royal College of Ophthalmology guidelines indicate that they must do a fast track referral on the day of the appointment, via fax or email, straight through to the eye clinic, so that the individual can be seen and treated within 2 weeks. This therefore indicates the urgency of the situation.

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

macularsociety.org/6months

Please do not hesitate to contact us if we can be of any further help. Our helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

Macular Society Helpline

JimGlanDwr profile image
JimGlanDwr

I was certainly referred to the hospital eye clinic either after a visit to the optician or after diabetic eye screening. I suspect the optician as during my examination I was prescribed reading glasses as well as my existing verifocals and given an Amsler chart and told how to use it. I later received an appointment to the eye clinic out of the blue, where they confirmed I had AMD gave me another Amsler chart and a Macular Society booklet and advised me to see my GP a soon as was convenient. For such a potentially devastating condition I would presume the process I went through was essential. Seeing your GP at least should be an essential step.

Something I found by accident is that you should notify the DVLA and probably your motor insurance company. You will not be stopped from driving but should you be unfortunate to be involved in an accident, you've done everything properly. To fill the DVLA form you will need to see your GP at least and preferably the eye clinic as well.

in reply to JimGlanDwr

My GP said 'old age, just get on with it.' So much for MD being a devastating condition!

Ayayay80 profile image
Ayayay80

Hello susan Q123

I was diagnosed in June with AMD by the optitian at a routine eye test and was told to come back in one years time. No referral, no urgency and no advise on how to check my eyes. Like you I was quite surprised and shocked to hear the news. Although I had become aware that reading was becoming more and more dificult I thought a new pair of specs would solve the problem. But it made no differerence; things were a bit larger, but not clearer. I went to my GP who referred me to the eye clinic. Got my first appointment at the clinic two months later and there I was diagnosed with wet AMD. I have now had my 3rd Eylea injection. Had I listened to the optition I would still be walking around with wet AMD and no treatment when more damage would probably have occured. So yes, I strongly believe you should ask your GP to refer you, if only to put your mind at rest. You may well be at the early stages of AMD, and I truly hope so, but it is better to be safe than sorry. Best wishes x

susanQ123 profile image
susanQ123

Thank you everyone for your helpful comments.

I will visit my GP very soon.

Best wishes

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