New AMD Diagnosis -Help!

[Sahara76]

Hi, I'm Sarah, I'm 41 and I was diagnosed on Tuesday with AMD in both eyes. Since then I've been reading maniacally trying to retain as much information as I can about it. I wonder if anyone out there has any advice? Trying to stay positive but it came as a bit of a shock to say the least 😱

[rosyG]

Hi.

it is hard when you first are diagnosed. If it is dry AMD this progresses very slowly and you just need to monitor your sight over time and make sure you see someone as soon as your vision is affected. If you have wet AMD there are good treatments for this. If you post some more details people on here will give their advice.

Read as much as you can about AMD and then you won't be too worried .I have had dry AMD for some years with no problem- have different issue at present and people on this forum have been really helpful

Good luck.

[Sahara76 in reply to rosyG]

Thank you for the reply. My AMD is dry, so watch, wait, and hope it's slow! I've done lots of reading since - partly because when I got home all I could remember was no treatment, no cure! It's helped to know that my diet can play a part, and that while it won't turn the clock back, it can help to slow things down a bit. It's just good to know I'm not alone!

[rosyG in reply to Sahara76]

Yes diet can help - I've just started taking one of the supplements too- Macushield but it's best to look into the research as I'm not sure it helps while AMD is mild I've started as have some macula oedema from separate issue and I felt it can't do any harm!

I'd be interested to hear if you find any good ideas about AND!!

[Lynae in reply to Sahara76]

I had the dry form at 40 and it turned wet 14 years later. NO FUN! Take eye vitamins, eat healthy, exercise and enjoy life.

[JimGlanDwr]

Hello

My diagnosis was last June, since then I like you was worried, had an annual eye check at opticians in January including Amsler grid and was told my eyes are good for someone my age (72), so am getting more confident about the future. In fact my eyesight had not altered much in several years but decided to change my varifocals which were several years old for a new pair with UV protection.

Have you spoken to your GP?

I know everyone is different and the progress of AMD differs with individuals.

I have worked outdoors most of my life and wore a wide brimmed hat to help prevent skin cancer and now to help against AMD as well. I'm a long time vegetarian and discussed supplements with both my GP ( the eye clinic suggested I do this) and optician the both said as I was easily getting my 5 a day supplements would not be any more benefit but it was up to me.

Try eating fruit for snacks instead of biscuits etc. we always have a variety available, our lunch is often fruit whilst our main evening meal is usually what's become known as Mediterranean or a vegetable curry. Whatever meal we eat has several vegetables in it, nowadays there are plenty of vegetarian recipe books available. You don't have to give up meat just increase your veggie intake.

If you drive you should notify DVLA and you insurance company.

[Sahara76]

I pick up my first ever pair of glasses on Monday, I got uv protection in them and a pair of prescription shades too. I work in a school so lots of computer work, overhead fluorescent lights and outside every day. My long distance eyesight is excellentvtheboptician said, just glasses for close up. I eat lots I've veggies, and my favourites are the free leafy ones luckily, but have been looking at supplements too, does snyone have a recommendation, there's so many different types. I'm going to see my gp next week, I was a bit stunned into silence on Tuesday, would be good to talk it over now I've had some time to take it in. I don't tend to eat much junk these days, prefer berries and yoghurt as a treat. Thank you everyone for your advice, it's helping a lot xx

[Ayayay80]

Hi Sarah

Oh the shock! I remember mine well. It takes a bit of time to come to terms with such diagnosis. As you will have read, dry AMD usually progresses only very slowly, and being young as you are, goes in your favour as far as the progress is concerned, but it does vary from person to person. Take heart, it is said that only 10% of people with dry AMD go on to develop wet AMD, the more serious condition. Not that dry AMD is not serious enough. Do not stress yourself out - stress can make matters worse. We are all with you and whenever you feel the need to talk to the people who understand your anxieties we are here to support you.

Just one more thing - check your eyes with the amsler grid now and then, maybe once a week or fortnight. Do not entirely rely on others. Although the optomotrists at your optitian may well be extremely efficient, they are not infallible and things can change. My personal experience of my optomotrists at the same optitian over the past 8 years has been peculiar, say the least. Their verdicts varied from cataracts in both eyes and I needed a yearly eye test to a later "No, no cataracts and your eyes are quite clear" when I decided on a 2 yearly eye test, though after each test I was given stronger glasses. Never once was AMD mentioned to me until my last vistit in June 2016, though it must have been present in at least the past two years. Within 2 months of that visit our eye clinic dignosed wet AMD in one eye and dry in the other, and yes, quite bad cataracts. I do not wish to alarm you or anyone else, just be vigilant.

Good Luck! xx

[Hidden]

Hi Sarah, sending you a hug x diiagnosis is always a shock x

Have you contacted the Macular Society? Lots of information on their website , a good tel/email helpline will probably help you to chat through things. Sorry don't have the tel no to hand.

They also have info on supplement Areds2 formula which is a particular combination of things at certain strengths so different to the "5a day".

Take care x

[Sahara76]

Thanks, I'll give them a call and chat things through xx

[eyes-alive]

Hi Sahara, you sound as though you have taken this relatively calmly, so that is good. I am just a bit older than you but when I was told I had AMD, I went into 2 weeks of panic and then gradually calmed down. I also work in a school, I find the bright lights difficult sometimes but other than that life has not really changed. I read as much as I could, in terms of supplements, if you look up research to do with AREDS, that recommends certain supplements that may be helpful. I am also taking a low dose of saffron which I also read a tiny bit of research about helping AMD. I am probably grasping at straws with what I am doing (also got special glasses for computer work) but with a diagnosis you can do very little about, it feels positive to at least do something. As someone else has already said you can get very different diagnoses from different people this has also happened to me which is very disheartening and confusing, so keep asking questions.

Good luck Sahara

[Rosalyn-helpline Partner]

Dear Sahara76,

I am sorry to read of your diagnosis. You do not mention which type of AMD that you have been diagnosed with nor if you have been referred?

If for instance you have been diagnosed with dry AMD then it is important that you obtain a referral to a retinal specialist with specialisms in younger people.

Dry AMD is related to the ageing process and is more common in individuals over the age of 55 years. There is currently no treatment for it, however, we talk about the importance of various lifestyle considerations which can hopefully have a positive impact on eye health and possibly potentially slow down the deterioration a little.

10-15% of people with the dry type go on to develop wet AMD in the same eye.

If an optometrist identifies possible wet AMD, 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, 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.

Please contact us for further information and discussion.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

[Sahara76]

Hi Rosalyn, I have dry MD in both eyes. I looked on my prescription from the optician and there was no mention of a referral. I'm going to see my gp tomorrow about it, I think I was in shock and I don't remember a lot of what they said tho be honest, so hopefully my gp will refer me on to someone with the right expertise. I think the shock is now subsiding and I am feeling upset and angry about it - much like bereavement. Work are being really good - counselling and occupational health referrals straightaway. At the moment I'm struggling to talk about it but I'm hoping that this will subside soon, after all it is what it is, and it's only the beginning of a long road! Thanks for your advice xx

[Rosalyn-helpline Partner]

Dear Sahara76,

We can provide you with details of retinal specialists with specialisms in younger people that you can then take to your GP when requesting a referral.

if you are finding it a challenge to discuss your recent diagnosis at present, then please email us on:

[e-mail]

Please mark the email FAO: Rosalyn and let me know which area you are based in. I can then let you know details of the specialists closest to you.

Kind regards

[Georgie_M]

Hi Sarah, I feel for you! So young to have AMD. Glad you have a diet with lots of veg which is helpful for AMD as well as general health. In particular, lots of kale is good for your eyes - look up recipes online if you don't like kale. There are lots of eye supplements available but only a few that has the same combination of vitamins as the AREDS2 study which my consultant tells me is the "gold standard" - I take one called Vision Defender AMD. I'm also doing "extra" things like reducing alcohol intake and regular exercise - not sure they have an effect on AMD but it won't harm and it's good for me anyway! Oh, if you smoke (actively or passively) then stop - who knows what damage they do to your eyes?? Anyway, I guess trying to be generally healthy with lifestyle changes would be better than doing nothing at all. My last eyes check up was fine so hope to maintain that as long as I can. Good luck!

[carolineJames]

A family member of mine was diagnosed with MD (wet) twenty years go. Then the only treatment was 'eat well'. He was told he'd be blind in five years . Nothing else- no injections, no treatment - not a thing. It's better for us now. He can still see pretty well in one eye. Don't dispair .