[Mira]

It is devastating to see your loved ones suffer, without being able to help them.

When in denial, there is nothing you can do, the same goes for BCD. Unfortunately😔

My best advice is for you to mentally prepare, to ‘catch’ him when he comes out of denial. To stay mentally and physically fit is essential! I also think encourage him to to sports and enjoy his most precious interests, will help him a lot. Maybe exploring new interests that does not require the perfect vision.

Best wishes.
//Mira

[Mira]

Hi, welcome and thanks for joining.
Please feel free to ask any questions – also those subjects not yet discussed.
//Mira

[Mira]

I would definitely use a smart cane – WHEN I decide to use one. I currently have one of those foldable canes, but I am not using it yet. In fact I should be using it in the darkness as I am completely blind by now, but my vanity and my habits is restricting me from using it. It is simply a matter of time and t
admitting to myself that I should be – whenever walking around in the dark.
//Mira

[Mira]

First signs of BCD in my early 30s was night blindness when in darker locations and fatigue in eyes after a long day in front of the computer.

The most severe and difficult period was definitely when I was examined and finally diagnosed, because my mental state had to catch up with what was going on. I don’t think – as such – there were a tremendous amount of symptoms in that period but the fact that I became aware of them was a crazy time;

– Night blindness

– Failure of colour perception within bright / dark / cold tones / warm tone colours

– Losing contrast vision; difficult to recognise people, difficult to see stairs (especially going down)

– Tunnel vision narrowing in

– Blurry central vision

– hyper sensitive eyes in sharp light (sun / spotlights etc)

– migraine and sometimes a kind of headache behind my eyes

– those weird floaters, small peanut shaped bright dots, appearing both with my eyes open and closed

– …. and I probably forgot some of the symptoms🤷🏽‍♀️

So quite similar symptoms as the rest of you has experienced. Now at the age of 43 my vision is blurred and a mess, however I am still able to get around in well-known places, without assistance. In the dark I am completely blind. For the past 5 years it has been a slow but degenerating process.
//Mira

[Mira]

I don’t do any specific supplements or has a specific routine to recommend. However in general I am protecting my eyes within sunglasses whenever the Sun is shining (not that common in Denmark, though) and I stay physically strong and eat healthy. I do a lot of sports because I know that my body is able to take over when my eyes are failing. Creating muscle memory for how to act in different situations, has helped me a lot.
Thanks for sharing.
//Mira

[Mira]

Hi guys, Mira from Denmark. First signs of BCD was in my early 30s, final diagnosis at 37. At the age of 43, I have lived with signs of BCD for 10 years.
I am currently the only patient registrated in Denmark.

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