So as usual, I'm running behind with my updates - I'm not sure how I ever thought I'd be able to keep up with blogging but as I love social media and talking (a lot), even if it's just to my computer screen via my fingertips, I'll carry on regardless!!
You might recall that in January I'd been back to Moorfields Eye Hospital in London for more electrodiagnostic tests - I was diagnosed with Sector Retinitis Pigmentosa 13 years ago but after a recent referral back to the eye clinic, the suspicions were that I don't have the 'sector' part, just the bog standard disease so we were going back to basics with the tests.
So last month I had a follow up appointment with my new consultant at our local hospital to get the test results. I really liked her and she was very good at putting me at ease - I'm used to hospital appointments and tests so they don't really bother me any more but I imagine a lot of people would find them very intimidating and quite nerve-wracking. Bizarrely, in a weird quirk of fate we discovered that she had actually been working with my original consultant at Moorfields when I was diagnosed all those years ago - small world! Anyway, the tests confirmed their suspicions and I do have the 'regular' form of the disease and not the 'sector' variation that was first thought.
Moorfields still have my original electrodiagostic test results from 2001 so were able to compare them and conclude that I've had quite a significant deterioration in my peripheral vision - I didn't have a clue! My central vision is perfect (thank goodness!!) and as the peripheral loss is so gradual I haven't noticed any decline at all. I still don't have any real typical symptoms (I can see in the dark / see the stars etc) but I can trip over thin air so I guess I should have been paying more attention to that! She confirmed that my degrees of vision are still way above the legal limit for driving so she is happy for me to carry on for now although ultimately that is down to the DVLA - my licence is due for renewal next month so we will see what they say. I still feel ok to drive but obviously everybody's safety is my top priority so if there's even a hint of being borderline I will stop, I'll hate it but imagine how much more I'd hate myself if I caused an accident!
My consultant also agreed to refer me for genetic counselling and genetic testing to see if we're able to narrow down my faulty genes - that way we can test little man and my nephews to see if it's likely to be passed onto them. As there are over 100 known genes that can cause RP (and many more that are unknown) it's a bit like finding a needle in a haystack but it'll help long term research too so I'm all for it. I received my referral letter to Professor Webster at Moorfields this week so now I just have to wait for an appointment - fingers crossed it won't take too long!
In the meantime, I'm going to carry on trying to make the most out of every day and using the vision I have now to create long term memories. I read a lovely article this week (you can read it HERE) about a little girl who has RP making a type of 'bucket list' for her and her family to do before she loses her sight - think I might do the same :)
Hope you all have a lovely day!
AFUK x
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