EYES on Retinitis Pigmentosa (RP)

It’s over there!

We were recently chatting with a colleague (Hannah) who has a condition called Retinitis Pigmentosa (RP)

This genetic condition affects about one in four thousand people and causes gradual decline and loss of the light sensing cells called photoreceptors in the retina.  There are over 100 genetic variations known to cause RP and people with it generally have some, or all of the following symptoms:

• Deterioration and loss of night vision.
• Loss of peripheral vision resulting in ‘tunnel’ vision.
• Loss of central vision.
• Problems with colour vision.

Hannah was saying one of the biggest challenges she faces as she loses her sight is how people describe direction to her.

“It’s over there” of absolutely no use to her whatsoever when people either point or nod in the direction of whatever ‘it’ is – because she can’t see those actions!

When she asks for more detail, the most common response she gets is ‘but you don’t look blind!’ – which again, is less than helpful and a great reminder to think before we speak!

We asked Hannah what the best way to help her is.  Quick to remind us this might not be useful for other visually impaired people, she said it really depends on whether she’s in a familiar environment or not.

If she’s somewhere familiar, saying that it’s next to something that she knows (or can see – remembering that many visually impaired people have a degree of useful sight) or in the direction of an ‘anchor point’ can be really useful.

If she’s somewhere new, giving an indication of where something is using a clock dial “it’s at about 4 o’clock” is a much better way of explaining positioning than saying “it’s behind you”!

Finding things on a screen

Hannah works as an accountant and relies heavily on screen-readers for her computer work.  She really appreciates it when people use descriptive headings in bigger font (rather than just using bold text), puts things in lists and don’t put emojis in the middle of sentences.

She’s also keen to remind us that using Camel Case in hashtags make her life so much easier.  Whilst MasterCard and AstroTurf are both brand names that used Camel Case way before hashtags even existed, when you capitalise the first letter of each word in a hashtag, screen readers can cope with it.

For example, her screen reader can read #EyesOnStAlbans but not #eyesonstalbans

The importance of regular eye examinations.

Yep – we’re on that message again.  Eye examinations are crucial in the identification and management of conditions like Retinitis Pigmentosa.  

As with all retinal conditions, this is where our extra tests come into their own!  All aspects of the examination are included in the single charge for the examination – including the OCT (that’s Optical Coherence Temography) images that we can take of your retinas to see exactly what is going on.

The field tests, whilst often tiring, are also a great indication for us whether all is as it should be (when taking into account your age and other sight issues) or whether something untoward is going on.

To book in, pop into the shop or give us a call on 01727 838003. 

You can find Hannah on LinkedIn: https://www.linkedin.com/in/hannah-campbell-088b5541/