Mom's been told she has Dry Macular but 5 years after it was first spotted!

Hi there, I'm new here as my Mom has recently been told that she's got Dry Macular disease following a recent eye test at the opticians. She's been assisting my grandmother recently who has wet macular/impaired vision so her own diagnosis has really worried her.

To make matters worse it transpires that her optician actually diagnosed the condition back in 2012 but neglected to tell Mom at the time. Understandably she's angry/disappointed about this as she could have taken steps to take supplements and eat more greens from 2012!

She's complained to the optician and the matter now has the attention of a director and she's due to meet him today as he 'attempts to uncover why this has happened'. I'm accompanying her to that meeting but wondered if there are any other avenues to explore in terms of support in this matter?

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  • Hello adeven80,

    I am so sorry to learn about your mother's diagnosis with dry macular degeneration.

    See the link below which gives information about to make a complaint to the 'General Optical Council' which is the regulatory body for opticians in the UK;

    optical.org/en/Investigatin...

    As you mention, if your mother had been told earlier, she could have taken some appropriate steps.

    There are not many things that someone with Dry Macular Degeneration, (MD), can do to slow progress, but the following should help;

    1)Eat a balanced diet with a good intake of leafy green vegetables such as Kale, Spinach and Broccoli as often as possible. Consider taking a vitamin supplement; there are a number specifically made for those with dry MD; your Pharmacist, GP or eye care specialist can advise you on diet and supplements. The following link is to our booklet, ‘Nutrition and your Eyes’ which gives more information;

    macularsociety.org/sites/de...

    2)Do not smoke.

    3)Protect your eyes from the sunshine. Wear a good pair of sunglasses which have UV protection, and preferably with blue light protection as well. It is also a good idea to wear a wide brimmed hat on sunny days to cast a shadow over your eyes. If lying in the sun, just closing your eyes does not protect them; the rays of the sun will penetrate your eyelids and cause damage to your macular and retina. Another link below to our booklet; ‘Protecting your Eyes’ expands on this;

    macularsociety.org/sites/de...

    4)If you are able, do a little exercise on a regular basis to get your heart pumping; but be careful not to overdo it if you have other health issues! Maintaining a healthy weight is of course beneficial.

    You or your mother may wish to take advantage of 6 months free membership to the Macular Society. See the following link for more details;

    macularsociety.org/6months

    Best wishes

    Macular Society

  • Thanks for the response and information provided. That's great and much appreciated.

  • Hello adeven80

    Sorry to hear about your mum's Dry MD. I understand why she is annoyed. Just because there is no treatment available at present for the dry condition some opticians do not seem it necessary to inform the patient. In my case - I was not told of my AMD in both eyes until June last year and by August I was diagnosed with wet AMD in one eye. I am convinced the dry condition was present on earlier visits to the optician, as I go every year. The condition usually, though not necessarily, starts in one eye first and for it to devolop so quickly into wet really makes me wonder.

    Is your grandmother your mother's mother? If so, it may well be genetic and I would advise you to have your eyes regularly checked too and check yourself with the Amsler Grid.

    Good luck to all three of you. x

  • Thanks Ayayay80, yes it is my grandmother so we've been advised to get tested too. My mom was told by Specsavers yesterday that it's not in fact Dry Macular but in fact drusen, which is an indicator of the condition and may well develop into something in the furute. I have advised my mom to go and get a second opinion for certainty.

  • I thought drusen meant dry AMD that's what I was informed confusing or what can anyone clarify

  • yes as well as drusen epithelium retinal pigment could be an indicator but everyone is diferent

  • I feel for your mom. I've been diagnosed with Dry Macular this year but apparently I had it in 2008 and wasn't informed. Infact the NHS opthalmologist told me my eyes were healthy at the time yet the optician who referred my on had commented that she thought there was a macular problem but needed it clarifying. So when I was referred again this year after complaining of seeing wonky lines with my left eye I was told by the NHS opthalmologist that 'this is what you had before in 2008'. Imagine my suprise and shock. In fact it was delivered to me like this 'well it's the better of the two but there's no cure'.

    When I checked my GP's record sure enough it's there but no one told me in 2008. I'm quite depressed by it all as I'm quite proactive when it comes to my health. 8 years when I could have addressed my diet and lifestyle.

    I even requested a copy of the letter to my GP from 2008 which mentioned other things too.

    Sorry I'm ranting now but feel totally knocked back by this.

    I hope you and your mom have success and wish you well.

    Sallyb

  • Thanks Sally, good luck to you too. We are all still trying to assess all the information delivered to my mom and seeking copies of her notes too from Specsavers. The chap we met was very apologetic and handled the meeting well but we still need some answers, like you. Take care.

  • I was told that I was informed about the condition in 2007 when I was not told until 2014

  • Hi adeven80, I understand that your Mum might be upset, but for me (and I might be alone in this) she has had 5 years without living under that "MD cloud". I have no visible (to me) signs of my AMD but every time my eyes seem less "strong" I have this horrible feeling of "this is the beginning" of the deterioration. I appreciate that she would have taken supplements etc to help her eyes but there isn't that much evidence that they work (as told to me by my optician) but unlike lots of other people I am still doing and taking everything I can. However I think I would have liked more time without this axe over my head to just enjoy life. I think it is a shock whenever you are told. Best of luck.

  • Thank you

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