People often ask what I can or can’t see as a Stargardt’s patient…

10 Jul

I am now seven years into Stargardt’s disease. I was told on diagnosis that it’s a degenerative condition, which means that is progressively deteriorates/goes worse over time.

Here’s some pictures that I found on the internet of other people trying to explain what they can see:

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The picture above I would say is kind of right… Although in addition to loosing my central vision, where they have a grey spot mine is somewhat different. My blind spot is very twinkly and always seems to be wiggling about and almost flashing,.. It isn’t grey like the picture above, it’s just almost invisible as it’s not a colour it very strange actually trying to describe it whilst looking at it … It’s very bright, imagine a close up of a fingerprint with all of those strange shapes and lines. So many lines, like millions of them bundled together extremely dense and tight-knit.

Looking into the blind area makes me feel very sick actually, and as such is something I don’t do often…

…When I shut my eyes I also see my flashing blind spot after looking at bright lights it’s almost like when you have had a photo taken and the bright lingering flashes but in a circular shape but not purple or blue a strange invisible colour (I hope this is understandable!!!!!)

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My peripheral (outer) vision to the picture above is actually much sharper than this with contact lenses in. Although you can slightly see through this blind spot on the picture above as it looks very blurred. Nothing comes through my blind area at all. My blind spot is like a total block in my eyesight.

But what about seeing things from a distance or in a group?

The closer I am to things and people then the better I can see it/them. Well, by see it/them, I can’t necessarily see them, but I can tell who it is…

I find it difficult when I’m in big groups as the (limited and extremely distorted) information I have to make sense of is very overwhelming. In a group situation, I am always trying to piece together who is saying what, recognising voices thinking, are they looking at me, are they talking to me etc ….. But once I’ve figured out who is who and what everybody is wearing (as long as they don’t get changed ha) I go about life as any other would!

Sometimes I can work out who is who within a minute, or sometimes in an instant, or if I’m expecting certain people to be at a certain place or if people come to my house I immediately know as I am expecting them.

If I was to look out of the window it’s a different story as from my window to the pavement is around five metres away. Even at this distance I could probably only just about tell if the person was a boy or a girl depending on how obvious clothing colors etc are. I have no more detail than colours and very vague shapes at this distance.

To read anything from a wine bottle to a magazine is virtually impossible without “aids” magnification… Everything takes ten times longer that it should.

Looking at things up close is much better than far away, if, what I am holding close to my eyes is big enough to read. .. If I was to hold TV remote control close to my eyes, I can see there are colours or perhaps shapes of the buttons, but even at this distance I can’t see or read any of the numbers, letter or symbols on the remote. Once I have been shown how to use things and which buttons to press I can remember this and take it from there.

Things littereally disappear in front of my eyes. Quite strange really.

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One Response to “People often ask what I can or can’t see as a Stargardt’s patient…”

  1. Sue kitson October 13, 2014 at 6:43 am #

    A really good explanation. You are an inspiration to all around you. Love you. Xx

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