Are we so helpless?

[rollerboy]

I have intermediate dry AMD, and I get fed up being told there's nothing I can do about it other than take AREDS2. Should be more than that - for example -

AMD is caused by drusen cluttering up the macula - this only happens to 1 person in 30. Which raises a few questions ...

1) Where dies the drusen go in the other 29 people?

2) Why can't my drusen be re-directed there?

3) How do I avoid making my drusen biigger and fatter?

4) Better still, how so I starve the little buggers?

To a layman, it seems simple enough to just wash them off. Evidently it isn't, but so we really have to sit around and let it all happen?

[maryparry]

I take it medical research is not your field...not mine either but there is a huge amount of research going on and I know enough to say that it is a holy grail and whoever discovers the answer will be a very wealthy individual so fear not, you will be one of the first to know when you hear a loud eureka coming from the labs

[rollerboy in reply to maryparry]

Hello Mary - fancy you guessing that medical research is not my forte! ... I'm in the Mechanical arts - find a problem - fix it - end of story. I guess the Biological arts are a bit different. There are a few promising lines - low levell lasers and genetics being the most likely candidates for the 'Eureka' moment - but as usual I want it done NOW ... whoever finds rgw answer deserves every penny ...

[willnick]

I agree . I have dry AMD and apparently large drusen. On my left eye there is some right close to the fovea and distortion is getting very bad. Fortunately the right is better and I can see reasonably well at the moment I have been assured it is dry and just see the optician every year, they have now got a scanner which is an improvement.

Its depressing nothing can be done to prevent the progress of these lumps.

[StokeySue]

My understanding is that drusen do not *cause* macular degeneration but are associated with it, more an early warning sign that the rpe (retinal pigmented epithelium) is deteriorating in a way that is likely to lead to AMD. Apparently most people have some drusen by the time they reach AMD age, but they are smaller and less noticeable in those who don't develop the condition/ It probably involves quite complex gentics, and that's difficult stuff

There is a lot of research going on to find out why some pope suffer and some people don't, but no, we don't know, And when we do it will take some time to turn that into a cure or better a prevention.

It's rough when we are told there's nothing that can be done - I have MMD which first developed over 30 years ago, and there was nothing that could be done then. Fortunately my second eye decided to wait 20 years before developing wet, by which time there were ant-VEGF injections. I spent all those years in research, in drug development, there are many conditions also in limbo, but we've been so successful with many conditions we tend to forget that not everything is yet treatable,

[rollerboy in reply to StokeySue]

Hi StokeySue - there's the problem, I'm not even sure what causes what - and neither is my Eye-guy. He doesn't want to know as he's up to his eyes all the time (!). You describe another thing that puzzles me - my left eye went phut 12 years ago - not helped by a supposedly qualified guy shining ever brighter light into it because he couldn't see the retinas, until it hurt and I refused - 10 days later - BANG! But at least that eye has geographical atrophy and has remained unchanged in those years, so I'm hoping for something of the sort in the right eye too, ideally before I can't read at all ... I started a course of saffron treatment too because it 'might' (I hate those weasel words!) help, but after 10 days things were noticeably worse - so I enquired and was told to stop taking it immediately. As it is supposed to work at the genetic level, that was a particular disappointment to me. No explanation - apparently I'm the only person on Earth to have had that experience ... it's like trying to swim in treacle ,,,

[StokeySue in reply to rollerboy]

I don't think anything that works at the genetic level is likely to do much in 10 days but you never know

When we are not sure, but we have some clues, in biology/medicine we tend to describe a condition as "multi-factorial" - meaning it has a load of interacting causes, and we can't unpick them and prioritise them. In my case (MMD) a researcher told me that as far as they knew then (this was nearly 10 years ago, the picture may have changed) to get the full-blown syndrome, which I have, I probably needed 5 specific genes to have specific versions, I think of it, if you want a mechanical analogy, as a bit like a 5 reel fruit machine - you only get the problem if the right picture comes up on all 5 reels, but you may have some issues if only some of them come up. Does that make more sense? There is work ongoing into the genetics of AMD, I've met a couple of the researchers.

You probably need some environmental factors too to precipitate an acute problem., hence possibly the difference between 2 eyes, but there could be other reasons. When my first (right) eye went all those years ago, it was a sudden catastrophic failure of an acute bleed leading to permanent scarring called a Foster Fuchs spot (this an MMD thing not an AMD thing). At the time I was advised to protect my other eye by not playing squash, as the constant head banging might lead to retinal detachment (a real risk in high myopia) and it's just possible that something like that contributed for me, but we didn't know for sure, and I never will. I don't think anyone has worked out what the environmental inputs into AMD are yet, after all, it takes decades to happen, that's a lot of data to look through