35yr old newly diagnosed with dry macular degeneration

[Jol81]

Hi i have just been diagnosed with dry macular degeneration, i am 35yrs old and have been referred for a ERG. I am still getting head around this condition and what it means. I am worried what they will be testing for with an ERG. I have a cope of my clinic letter and it just says they are sending me for this because of my age and because i have no family history. Just wondering if they are thinking if anything else is going on 😢

[marianS]

Hi Jol,

I am sorry to read of your eye problems, so rarely happening at your young age. This must be a scary and big issue to get your head round but it is good to know that you are being checked out. I wonder which country you live in as we do not have a test called ERG in UK. We are a national charity in UK for Age-related Macular Degeneration, which mostly affects people over 55yrs. Your specialist doctor would be the one to ask about what they think may be going on. However, there are a number of conditions that may resemble dry macular degeneration.

Once your doctor has made a diagnosis, and advised whether there is any treatment you may need, you may appreciate some emotional support, through counselling, as you try to come to terms with any practical, financial or lifestyle adjustments needed.

We have a UK website with some general information that you may find helpful , although many of the resources and guidance is only relevant for UK.

I wish you well for the future.

Kind regards,

Helpline - Macular Society

macularsociety.org/?gclid=C...

Tel [phone] Monday – Friday 09.00-17.00

[Jol81 in reply to marianS]

Thank you for your reply i live in scotland it stands for electroretiniagraphy i will just have to wait until i see the specialist in glasgow.

[marianS in reply to Jol81]

Hi Jol

I thought you might have been living in US as I could only find ERG information on an American website!

Seems like you need to get more clarity before knowing what help you need, but at least we can help you with information and resource sign-posting as you are within UK. We could also arrange telephone counselling if it is a macular-related condition

All the best to you, as before, and suggest you ring us if you want to discuss anything.

Macular Society

0300 3030 111

Monday - Friday 09.00-17.00

[Ayayay80]

Hi Jol81

So sorry to hear it. I hope you are not worrying yourself sick. It is all too easy to jump to conclusions. I think most of us have done it to a greater or lesser degree at some time or another. If you key into your computer the word Electroretinogram you will find a good site that tells you in easy words what an ERG is, for what reason (and there are a number of them) it may be used and also the procedure a patient would undergo. It may be worth your while to read it so that you understand better beforehand and can ask the consultant the right sort of questions.

Although I understand the mechanics of it I have no personal experience of an ERG, but I know how worrying this must be for you. It always seems worse when we don't know or not understand what is going on. I hope everything goes well for you. If and when you feel up to it afterwards perhaps you will share your experience with us. If I could I would come and hold your hand. Good Luck!

[Jol81 in reply to Ayayay80]

Thank you for your kind reply i have looked up what the procedure will entail n it doesnt sound horrendous it says its nt painful im just worried what they are looking for 😕 Im trying not over think it until im seen at glasgow ive made appt with my gp nxt week to see if he can answer any of my question n find out how long before im seen, had a good cry this afternoon n feel better now x

[Ayayay80 in reply to Jol81]

You poor soul, Jol. I know you must feel alone despite all those wonderful, kind people around you and on this forum? That is the nature of things when it comes to the crunch. But we are with you, really. To have a good cry is sometimes as good as anything to relief the tension. Chin up and keep in touch. xx

[rosyG in reply to Jol81]

hopefully they are sending you for tests just to check everything as they probably can't understand it starting at such a young age. It would be worth looking at whether taking any of the supplements would be helpful. I take Macushield - there is some debate about whether it helps or not but this, and dietary points, are worthwhile for you to look into.

I think the society have some leaflets and hope they may put a link here for you

[Jol81 in reply to rosyG]

Thank you for your reply i have order sm supplements n following the dietery advice will just have to wait for scan at glasgow x

[rosyG in reply to Jol81]

Good luck= let us know how you get on

[Bella80]

I am also quite young (36) and after several months of testing, I have been diagnosed with Benign concentric annular macular dystrophy. The ERG is not too awful, but will allow the doctors to see how your eyes and brain work together, but asking you to look at pixels while small sensors on your head and eyes record information. Always take dark glasses to your appointments, as the drops will make your eyes very sensitive to light. The ERG may be repeated after a couple of years and this allows them to see any changes that might have occurred. When you speak to the consultant, ask about genetic counselling, as this is one of the few ways of finding out exactly which gene has caused the problem, and can help map family history, although nobody else shows symptoms. Good luck. Let us know how you get on. Xx

[Jol81 in reply to Bella80]

Thank you that is very helpful i am making a list of questions for when i go, as last tues appt it came as a bit of a bombshell n i was totally unprepared, consultant wasnt great n the only thing i remember him telling me was that i had the eyes of a sixty yr old n him asking me how old i was about 3 times! No offensive to anyone sixty but nt what u want hear at 35. I did phone n get copy of clinic letter n then my local optician kindy seen me n gave me a leaflet about macular degeneration n an ansler chart, i will just have to wait for my ERG in Glasgow n try not to over think n over google it x

[Bella80 in reply to Jol81]

I was told I had the eyes of an 80 year old, so you have made me feel pretty good, that it isn't just me. I have been taking one of my sisters to all my appointments as my mind goes blank, even with a list of questions written down in front of me. She is also really good at putting things into perspective. You will need to take someone to drive you anyway. I am originally from Aberdeenshire, but now live in Cornwall, but regularly travel to Southampton to be seen by a specialist, as I didn't like the one I saw in Cornwall. There are hundreds of types of MD, don't use Google, wait until you have an accurate diagnosis, and just remember that nothing will change between now and your appointment, and just enjoy life . Xxx

[loopyloopz]

hi I'm 30 and have md with no history of it in the family or any other reason to have it, just that I have it, I got diagnosed just under a year ago, and Il be honest yes its a daunting thought when your told you will lose the vison in that eye, but really do yourself a favour don't google it coz that's when it becomes scary, but do ask the consultants any questions you have, they will talk to you and explain.

[JJnan]

Its a thing we all have to come to terms with but reading about you younger ones is very sad, lots of good advice here for you all and wishing you all good luck xxxx