Hi everyone. I have recently been diagnosed with early on set glaucoma at 38 with currently no visual loss. I am absolutely petrified of what the future holds, I know I'm alright for a few years yet but realistically what is my quality of life going to be like when I'm older.If life gets too bad I'm worried what I might to do myself cus I'm not living my final days blind.
Sorry for the negative story but sometimes it feels better just to blurt it out
hi Hello12345q
I’m early onset myself I was 34 years old when I was diagnosed I’m 40 now my eye pressure has been high this year up to 35 I have had lazer which so far has reduced the pressure in one eye ( I just had lazer on the right eye ) some vision difficulties with right eye ( blurry reading from a distance but that is all ) I can see , drive , work and do all the things I used to just have to have regular eye pressure checks use eye drops . Certainly the future is scary ( I try not to think about it live for the now ) there is lots of treatments available and from most professional/ opinion the likely hood of going blind is minimal from glaucoma as there are much more treatments available than years ago . Such as surgery, lazer , eye drops you just need to do what ur dr tells you and hope it works . I’m still very scared this last batch of lazer won’t work and will have to look at surgery but I can’t go living my life on what ifs just have to wait and see . Try to live in the now as there is hope and the drs are there to help and save your sight as long as possible. I don’t like to think on the future but please be aware there are treatments to help save ur sight and prevent damage from the glaucoma it’s not a life sentence of gloom and doom it’s just life long treatments and drs visits . Which can become draining but look after your mental health and wellbeing. Take care it is a scary road but your not alone on it.
Thanks for the reply pinks. To live in the moment is great advice as we cannot predict anything. There is always a niggle feeling in my mind which I need to try and let go of
the niggle is hard I get it too but try not to stress or think ur life is over cause of this diagnosis ( , keeping busy is good .walking is good ) calm is a good start . If u have a good specialist they will help u . my dr can see I want to run away from it but can’t. U can live with it , control it , it’s hard as we are young my dr told me I’m the youngest he’s ever seen with such high pressure and yeah I wasn’t happy about that so I asked him well what are u gonna do to fix it & can u fix it ( it’s all trial and hope it works kinda thing it’s all eye drops and stuff but u will be ok . U have to keep hope up and try not to dwell on the appointments and the what ifs and keep away from DR google it can be beneficial but mostly causes more stress googling up the what ifs treatment
Welcome to the forum! And you blurt away; it is better getting those thoughts out there than bottling them up. We’ve all had them at some point. I’m sure there will be a flurry of people respond, who have adhered strictly to their treatment plan and have gone several decades living without any sight loss at all. It is the norm. I was diagnosed at 55yrs, not as young as you but still young for glaucoma, so I’m only 4 yrs into my journey with a way to go yet.
However my mom has had acute closed angle glaucoma for decades now, and is 87 and hasn’t lost any sight at all. She had lazer treatment early on and then a series of different eye drops. I would say she’s pretty healthy: doesn’t drink much alcohol but likes a coffee, eats well and spent much of her later life fell-walking, often walking all day for 3-5 days and for many miles. She joined a walking group with my Dad (91) and this became a happy supportive social life for them. They live great lives still. They survived WW2 as children (under kitchen tables as they were bombed), survived covid as pensioners (even though they lived in one of the areas with the highest number of cases and deaths, far from their family).
So my takeway from my mom is to keep fit, eat healthy, live life in moderation, seek supportive friends who share your joys in life, ask about laser treatment, do your drops on time every day, go to your appointments and enjoy your life. The statistics say chances are you will not lose your sight.
What type of glaucoma do you have by the way? What were your eye pressures? What promoted the diagnosis?
agree exercise is key I love walking having glaucoma since 1983
Wow. You've had glaucoma for around 30 years? I see on your bio you are 60, so you were diagnosed around age 30? How is your vision now and how have things been during all that time?
Both eye pressure is 16 and 14
Thank you both for your replies. I have open angle. I went to specsavers for a glaucoma check as I have a family history of it. My pressures at that time back in March were 28 and 30 i was then referred and they had gone up slightly after another check.I was taking drops and two checks later they were down to 18 and 19 but my last appointment a week ago they had gone up to 26 so changed drops. May opt for lazer when I go back early Jan
I’m in a very similar situation to you with no field loss but a dodgy nerve, in my case with one eye. I was referred to the hospital at the same age ad you.
Let’s put things into context:
The most important thing to remember is that it has been caught extremely early. A lot of people show up at their opticians with field defects already there and therefore their optic nerve had a lot more damage than yours has. This gives you a much better chance.
OCT will help your doctor to see any progression before it shows up on a VF test. OCT is fairly new, before this a doctor would judge progression on VF tests and their own judgement of photos but because of OCT treatment can be changed and any progression halted before it affects your vision.
Many of the people who have damage to their vision will not have access to OCT and the glaucoma will only have been picked up when it has damaged their vision.
You are young and most people’s fear is driving. A lot of people give up driving in their 70s anyway, so don’t worry too much about that.
I’d also try your best to avoid looking on forums like this, as most of what you read will be negative as people will be active on forums when they are having issues. There are around 350,000 people in the U.K. who have been diagnosed with glaucoma and most don’t feel the need to post as the majority will be fine.
My final piece of advice is to ask lots of questions when you go to the hospital. Ask to see the results from VF tests, OCTs ask to see the old ones to compare and ask what you pressures are. You will be tempted to research around the time of your appointments (hence me on here now!) and having information about yourself will be really useful. There is nothing worse than getting home and wishing you’d asked about something and then having to wait 6 months (which will be more like 9-11 months) until your next appointment. Once you’ve had your appointment, forget about it until your next appointment.
totally agree with Jim
Thanks Jim. It does help to look at context and appreciate your advice.How long have you been living with it and what are you like now and how has it all been for you
very good advice! You’ve hit the nail on the head on so many ways! I only tend to come on here just before and after my appointments!
Hi - I was diagnosed at 37 and felt exactly the same way. After having lasering, I've realised that if anything will change, it will over a very long time, and I've still got (comparatively) loads of time, so am enjoying things in the short term as much as I can.
Most of us have had a very similar initial reaction to our glaucoma diagnoses. At your young age, you have longer to deal with it, but the fact that you were diagnosed so early and without having lost any vision is a great advantage. Glaucoma is the "sneak thief of vision," but in your case, it's now out in the open where you can deal with it to prevent vision loss. For all I know, I may have had glaucoma since I was in my thirties, but unfortunately, mine was discovered many years later, when I'd already had significant vision loss. That was ten years ago, and although it has progressed over that time, my vision is still functional in most every way. My recent trabeculectomies have eliminated my need for eye drops, and I feel very positive about never having to deal with going blind. Don't be afraid, there are many treatments for this, and cures just over the horizon, very likely available during your lifetime. Best wishes for you.
Thank you for your reply and everyone else. I certainly feel a little better since the first post, probably mainly through exhaustion of thinking about it. This place really helps, everyone is great.
My main concern is mainly my age, my consultant told me I was very fortunate, I think that was in relation to it being found. Its hard to think of yourself as 'fortunate' but there we go.
I don’t want to go on
I survived the Trabeculectomy 
How long is DVLA backlog at present?
How to increase scarring after trabeculectomy 
