Retinopathy

JamieTwigg

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Good morning, has anyone dealt with severe retinopathy at an early age. I am currently 28 years old, I don’t have severe but it seems to be a future part of my life and maybe everyone who has diabetes.

Just wondering if anyone’s had it early on and what treatments they had and what it resulted in, how did it effect your day to day lives, working, driving, living?
 
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EllieM

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I've been T1 for 50 years (since I was 8) and have had on again off again mild background retinopathy for decades. I remember being told in my 20s that I'd need laser treatment in my 30s or 40s but still haven't had any, and my condition would have to deteriorate a couple of levels for anyone to give me treatment. Better control reduces it for me, and I was promised recently (possibly rashly) by my endocrinologist that I wasn't going to go blind, lose my kidneys, a leg, etc etc.

My recommendation would be not to panic, but use the condition as an indication that you need to tighten your control.
 

Grant_Vicat

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Good morning, has anyone dealt with severe retinopathy at an early age. I am currently 28 years old, I don’t have severe but it seems to be a future part of my life and maybe everyone who has diabetes.

Just wondering if anyone’s had it early on and what treatments they had and what it resulted in, how did it effect your day to day lives, working, driving, living?
Hi @JamieTwigg I especially agree with @EllieM 's remark about better control. I had several doses of very primitive laser treatment between 1979 and 1983. Because I took advice seriously, I have had nothing done since and have been able to do all the things you mention. Obviously, because of scarring I would not attempt something like making Swiss watches, but most jobs are open to me. I wouldn't worry about the future. Provided you keep the best control you can, you might avoid treatment entirely. I often think about smokers who have died in their 90's and confounded all predictions. It underlines how different we all are and cannot therefore be compartmentalised. Have a long troublefree life!
 
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MarkMunday

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... I don’t have severe but it seems to be a future part of my life and maybe everyone who has diabetes. ...
Most of us have background retinopathy at some stage. Isolated aneurysms that usually disappear if control is good. Retinopathy is only a problem if it becomes proliferative. Because of blockages, new blood vessels are formed. They are fragile and when they burst, treatment is required. During my 43 years of T1, there have been some aneurysms, but they are all gone now. Some people seem to get get proliferative retinopathy in spite of maintaining good control, but we can only do our best.
 

Flowercity

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Most of us have background retinopathy at some stage. Isolated aneurysms that usually disappear if control is good. Retinopathy is only a problem if it becomes proliferative. Because of blockages, new blood vessels are formed. They are fragile and when they burst, treatment is required. During my 43 years of T1, there have been some aneurysms, but they are all gone now. Some people seem to get get proliferative retinopathy in spite of maintaining good control, but we can only do our best.
Yes I agree we can only do our best. I have had diabetes for 42 years and some aneurysms showed up. I didn't know that they can disappear. Sounds good to me.
 

Trishhh

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Hi @JamieTwigg I especially agree with @EllieM 's remark about better control. I had several doses of very primitive laser treatment between 1979 and 1983. Because I took advice seriously, I have had nothing done since and have been able to do all the things you mention. Obviously, because of scarring I would not attempt something like making Swiss watches, but most jobs are open to me. I wouldn't worry about the future. Provided you keep the best control you can, you might avoid treatment entirely. I often think about smokers who have died in their 90's and confounded all predictions. It underlines how different we all are and cannot therefore be compartmentalised. Have a long troublefree life!
Hi Grant,

May I ask if you still drive after having laser treatment? My husband had it today and is quite low about losing some peripheral vision. I'm scared of how losing his licence would make him feel.
 

Trishhh

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Good morning, has anyone dealt with severe retinopathy at an early age. I am currently 28 years old, I don’t have severe but it seems to be a future part of my life and maybe everyone who has diabetes.

Just wondering if anyone’s had it early on and what treatments they had and what it resulted in, how did it effect your day to day lives, working, driving, living?
Hi Jamie,

I'm sorry for your diagnosis, but I suppose you'll be fine if you have good control of your blood sugar levels. My husband has been diabetic for nearly forty years and only now he needed laser treatment for retinopathy. If you're careful, you might never need it.
 

Grant_Vicat

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Hi Grant,

May I ask if you still drive after having laser treatment? My husband had it today and is quite low about losing some peripheral vision. I'm scared of how losing his licence would make him feel.
Hi @Trishhh I hope your husband might be encouraged to hear that I have to make 3 journeys today, driving to Hospital for a blood test 8 miles away; Returning to Ixworth, picking up a passenger and taking her to a funeral at which I am playing the organ; driving to another funeral 8 miles away: returning to Ixworth. All of this requires good vision! I do have a blind spot at about 5.00, but it in no way affects any of the above. I hope his treatment turns out to be a great Christmas present for both of you. Wish him well!
 
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Trishhh

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Hi @Trishhh I hope your husband might be encouraged to hear that I have to make 3 journeys today, driving to Hospital for a blood test 8 miles away; Returning to Ixworth, picking up a passenger and taking her to a funeral at which I am playing the organ; driving to another funeral 8 miles away: returning to Ixworth. All of this requires good vision! I do have a blind spot at about 5.00, but it in no way affects any of the above. I hope his treatment turns out to be a great Christmas present for both of you. Wish him well!
Thank you for sharing this. It's great to know about your great outcome! I'm glad not only for the hope to my husband, but for you as well. My Christmas this year so far has been quite tearful but hopefully it'll improve in the next few days. Merry Christmas for you
 

Grant_Vicat

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My Christmas this year so far has been quite tearful but hopefully it'll improve in the next few days. Merry Christmas for you
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I, and especially my wife, can fully understand this. At the time of treatment there is a powerful helplessness, hopelessness, and resignation. Obviously each patient is different but I would reckon that your husband stands a better chance than I did in 1979-83. I hope optimism starts to prevail soon. Let's hope 2024 is infinitely better than 2023! Good luck!
 
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Trishhh

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I, and especially my wife, can fully understand this. At the time of treatment there is a powerful helplessness, hopelessness, and resignation. Obviously each patient is different but I would reckon that your husband stands a better chance than I did in 1979-83. I hope optimism starts to prevail soon. Let's hope 2024 is infinitely better than 2023! Good luck!
Thank you
 
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