What I see where my vision is impaired - Macular Society

Macular Society

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What I see where my vision is impaired

Alberni79 profile image
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My name is Michael. I'm 43 years old. I was diagnosed with macular dystrophy several years ago. I was told that without some type of genetic test that it's difficult to know whether or not it is adult onset or Best's Disease. At that time, I had never heard of this condition. Previous visits to the optometrist never revealed any kind of condition and so I wondered if the flashing lights, distorted vision and kaleidoscope colors were somehow in my head. I had noticed that I had trouble recognizing faces quickly or often I couldn't discern what I was looking at although I can see quite clearly it is disturbed with all of this optical noise.In the darkness it often looks somewhat like fireworks repeatedly going off and with colors often violets and yellows. Other times it appears as a swirling kaleidoscope. It can be quite beautiful and mesmerizing at night when my eyes are closed, but I cannot turn it off.

I've tried to explain it to friends and family members, however it is difficult to describe and probably just as difficult for them to imagine. I would be very interested to talk to someone who has had the same experience as I have. Is there anyone out there who experiences what I have described?

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Alberni79
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springcross profile image
springcross

Hi Alberni79. I'm sorry to hear about your condition. I don't know anything about it but can quite imagine how unpleasant it is for you. I've given a link below on the condition from the RNIB here in the UK for you to read (it will be the CNIB in Canada but the two sites may not be the same) which you may already have read but it does mention genetic testing and counselling which you may find useful. There may be people on this forum who have the condition and can help with info when they see your post and also the Macular Society on 0300 3030 111 who could point you in the right direction. Good luck to you and I really hope you can get some help with this.

rnib.org.uk/your-eyes/eye-c....

Alberni79 profile image
Alberni79 in reply to springcross

Thanks for replying! I'm learning to live with it, but as I understand, there is no treatment as of yet. Mostly I would just like to talk to someone who is exodus the same condition. Cheers!

iAdnanShah profile image
iAdnanShah

Get well soon.

First of all discuss this with your eye doctor, he can only explain what disease you have.

Most probably you're having retinal detachment, don't delay this and start your treatment as soon as possible.

Alberni79 profile image
Alberni79 in reply to iAdnanShah

I have spoken with him and I understand my condition. There is no treatment. It is not a detached retina.

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