Thread for those of us with a visual impairment

[TigerRag]

Have had a look through the health board and can't find one, so I thought I'd set one up.

A bit about me - I'm still, after 33 years, looking for a proper diagnosis! All anyone can work out is that I have Nystagmus (I was born with this) and that I'm colourblind. My pupils are a different size; but this doesn't cause any problems.

I've had so many tests and get the same answer every time - there's something but no one can decide what or they can't test me properly due to my eyes constantly shaking. I'm now trying to find out (and struggling!) whether this is linked to my neurological issues.

I'm now waiting to see a neuro othphamologist.

Some useful information:
You can get a disabled persons railcard for £20 a year / £54 for 3 years if you're registered partially sighted or blind or receive any rate of PIP. If you have a friend travelling with you, they get the discount too. For those of us who don't live in London, but have an oyster card, you can add your railcard to your oyster card and get 1/3 discount too.

You can get a disabled persons travel pass if you're registered blind or partially sighted or you'd be refused a driving licence for reasons other than drugs or alcohol. A former consultant of mine said that he's met so many people with my diagnosis who meet the criteria for being able to drive; but when the test comes around, they fail it because Nystagmus is affected by things like stress and tiredness.

I'm lucky that I only have 1 bum eye so the other makes up for it and I am able to drive.

Like you, I tend to fascinate Opthamologists, I've been used as an example for students on many occasions which is always fun.

I was born with colabomas in both eyes, on the retina in my good eye and on the optic disc in my bad eye.

www.rnib.org.uk/eye-health/eye-conditions/coloboma

The position of the optic disc coloboma meant it was letting fluid in behind my macula which would build then recede. That knocked out a decent whack of my peripheral vision and eventually led to Serous macula detachment. Had reattachment surgery (vitrectomy) and a replacement lens fitted but the detachment itself cause me to lose a lot of my central vision. Visual acuity in that eye is now 6/48 which is classified as Moderate visual impairment in that eye. But with my glasses on the other eye makes up for it completely.

Only real restriction is that I'm not allowed contact lenses because no optician will take the risk of me getting an infection in the good eye and losing any vision.

Has anyone ever mentioned a coloboma to you? As having them on optic discs of both eyes can cause Nystagmus (see link provided above).