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A Personal experience of Retinitis Pigmentosa (RP) by Claire MacLaverty

It’s like someone is slowly turning down the dimmer switch on my view of the world. That’s the easiest way of describing my early experience of having RP.

Retinitis Pigmentosa, to give it its full scary title, was first mentioned by an optician when I was in my early twenties after noticing a pinkness at the back of the eyeball when he lifted an eyelid.

A referral was made to the local eye hospital, where they asked about my family history, as the condition is primarily hereditary. After further tests, it was confirmed, in sombre tones, that I had this rare eye disease with a big name.

I remember wondering what all the fuss was, thinking, ‘But I’m fine!’.  So what if I miss the odd step in the dark? I’ll concentrate harder.

Yet the fact that there was no treatment gave me pause for thought. The general prognosis is that one can eventually become blind as the light-perceiving rods and cones at the back of the eyes continually die off over time.

The vision narrows to a kind of tunnel; however, the consultant told me if you are lucky, you might retain enough central vision to continue to read and watch TV and see faces. It varies with each individual.  This belief is what I’ve held onto ever since, almost to the point of denial.

Over thirty years on, and I’m feeling the decline in my vision more keenly now. On a year-to-year basis, the winters get darker, and an invasive glare mars the best summer days. I now carry my symbol cane everywhere to warn the public that I don’t have the whole picture.

If you shoulder into someone or trip over their dog, believe me, they are much more forgiving as soon as they notice you have a white stick.

The phrase ‘points of impact’ can be helpful when discussing individual sight-loss journeys. These are usually things like diagnosis, becoming registered sight-impaired etc. But equally, they can be social embarrassments like your first fall or failing to see an outstretched hand when you first meet someone (mortifying), leaving them to go off feeling snubbed.

Walking into mirrors, bollards, and sandwich boards was a regular occurrence. Toppling the glasses at dinner tables is now my speciality.

Although most would agree that one of the most challenging points of impact is losing your driving license. This is when reality kicks in. The blow to your independence spans the lifetime before you.

I remember being in my mid-thirties, casually thinking I must keep track of how much vision I was losing and booked in for a visual field test. The results didn’t seem catastrophic until the specialist told me I’d need to return my license to the DVLA.

Really? I thought, but I’m totally fine in the car. I had regularly driven up the M6 home to Scotland with 3 kids in the back when according to him, I shouldn’t have been driving for the last 10 years. That was quite a wake-up call.

When starting a family, you can’t help dreading the RP will show up in your kids in later life. So when I was offered genetic testing, I discovered I was the one in four result of both my parents carrying a faulty gene.  I drew the short straw where the two wrongs manifest as RP.  Quite rare, all considered. So I was hugely relieved that my daughters would avoid this level of visual impairment, for their generation, at least.

Working with people with all types of sight loss has led me to believe that those with RP tend to be quite resourceful.  It may be the slow decline that allows people to process, adapt and prepare. I was glad to find work at Visibility Scotland, where quite a few staff have a visual impairment.

We can empathize with those we help, and we keep abreast of the latest support available. If you are facing sight loss through RP, it’s a good idea to upskill on technology. Learn to touch type if you can. If you are an Apple person, Siri is your new best friend. Smart speakers too. You can make the print on your Kindle as large as you like.

You don’t need vision to work an iPad – just determination and a new language of touch. Get long-cane trained as soon as your council offer it. Claim your free travel card. Then get out and learn to navigate your local area, holding your head high.

Image of Paul Hanlon
Written by: Paul Hanlon

Posted on the: February 1, 2023
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