Maculopathy

NatashaGray99 said:

Hi there,

I recently received the results from my annual eye screening, being sent to see a specialist as they have detected maculopathy…
This news has affected me massively, and, to put it bluntly, I feel awful. Is there anyone that has been told they have this? And how do you cope/deal with it? What’s the progression of it like? And how do you cope with your diabetes, I often get so depressed about having diabetes, how it affects every single thing in life and often is the reason for medical issues… any chats or help would be greatly appreciated!

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Hi Natasha, I'm so sorry you are having to deal with this situation.

If I recall, @Jaylee has had some issues with his macula, so hopefully he might comment sometime.

@Jaylee if my memory fails me, I apologise.

Hi @NatashaGray99 ,

@AndBreathe is kind of in the ballpark, I was diagnosed a few years back with macula oedema..
Never heard of it at the time, more concerned about not getting any form of retinopathy?
I can empathise it can feel like a kick in the teeth. & oddly it was right after I'd tightened up my managment with my T1?

I would say, if your diabetes management right now is not is not ideal? Don't go crazy like I did whipping it into shape?
Slowly steady may slow things getting worse before things improve with the eyes..

On the positive side, the treatment I received & the outcome to date for me is more than expected & encouraging. (Entitlement to drive being one concern.) I was also, pushed to the point of needing to use "accessibility" functions on devices dispite corrective reading glasses. (Prescribed to gentlemen of a certain age..) That's how bad the distortion mid field of vision once was..?

I'll tag in @Dark Horse . Who seems to know the ophthalmology industry..

Jaylee said:

Hi @NatashaGray99 ,

@AndBreathe is kind of in the ballpark, I was diagnosed a few years back with macula oedema..
Never heard of it at the time, more concerned about not getting any form of retinopathy?
I can empathise it can feel like a kick in the teeth. & oddly it was right after I'd tightened up my managment with my T1?

I would say, if your diabetes management right now is not is not ideal? Don't go crazy like I did whipping it into shape?
Slowly steady may slow things getting worse before things improve with the eyes..

On the positive side, the treatment I received & the outcome to date for me is more than expected & encouraging. (Entitlement to drive being one concern.) I was also, pushed to the point of needing to use "accessibility" functions on devices dispite corrective reading glasses. (Prescribed to gentlemen of a certain age..) That's how bad the distortion mid field of vision once was..?

I'll tag in @Dark Horse . Who seems to know the ophthalmology industry..

Click to expand...

So typical for me, Jaylee. Close, but not cigar!

Thanks for helping nonetheless.

NatashaGray99 said:

Hi there,

I recently received the results from my annual eye screening, being sent to see a specialist as they have detected maculopathy…
This news has affected me massively, and, to put it bluntly, I feel awful. Is there anyone that has been told they have this? And how do you cope/deal with it? What’s the progression of it like? And how do you cope with your diabetes, I often get so depressed about having diabetes, how it affects every single thing in life and often is the reason for medical issues… any chats or help would be greatly appreciated!

Click to expand...

At the eye specialist you will have further tests - possible results are:-

• the maculopathy has resolved and you are discharged back to screening to be seen annually
• the maculopathy is mild and you are discharged back to the surveillance arm of the diabetic eye screening programme to be seen more frequently
• the maculopathy is moderate and you are monitored in the hospital eye service
• the maculopathy is more severe and you are offered treatment

The chances of progression are reduced by good diabetic control of blood glucose, blood pressure and lipids. If treatment is required, it has a good success rate.

In the meantime, continue working at maintaining good diabetic control and make sure you attend all the appointments you are offered.

Thanks to @Jaylee for the tag.

Hi, I’ve also recently been diagnosed woth this although I kinda knew something was up as my right eye has been slowly getting blurrier. Some days its worse than others but I am terrified about the future. Do you know whether it’s curable with tighter control as I know some complications are? I’ve had diabetes for 20 years now and I’m really fed up with it!

Charisma_1630 said:

Hi, I’ve also recently been diagnosed woth this although I kinda knew something was up as my right eye has been slowly getting blurrier. Some days its worse than others but I am terrified about the future. Do you know whether it’s curable with tighter control as I know some complications are? I’ve had diabetes for 20 years now and I’m really fed up with it!

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I have just watched about macula degeneration and the specialist giving the talk by the Macula Society which will go on their website later said that Age related Macula Degeneration (AMD) is progressive but tight control will help to slow the progression down but will not reverse it. I am even more gutted because I am very short sighted plus have the start of cataracts and also have astigmatism in my right eye which is another problem with surgery. The AMD is in my left eye and is dry. The specialist said that having diabetes means that people get cataracts 10 years younger than people without diabetes so having tight control may help to delay this. Having diabetes also increases risk of developing AMD without as well as retinopathy. So far I have not developed retinopathy and have had diabetes 17 years. Being very short sighted means cataracts are more difficult to deal with because the eye is bigger and causes stretching. I had no idea about short sightedness meaning I was more likely to develope AMD. I cannot reduce my carbs too much as underweight and my DN wants me to put weight on but she said she would give more medication in 3 months time if my hba1c has gone up. Feeling that there is a battle and not liking the thought of giving up my car which is more a case of when rather than if after what I have just learned.