Appointment at Moorfields

Yesterday I went to Moorfields Eye Hospital for Part 2 of a 5 year study.

I'm going to divide the day into morning and afternoon to make it easier for me to think of what to talk about first.

Morning:

We (my Dad came along too) arrived at Moorfields early to our appointment and as it is a research study that I'm participating in we got our travel expenses paid back. I asked how many people had come back for Part 2 and I was told 10 people. I was quite surprised by this as I thought there were loads more for Part 1, but in fact it was only 14 people. I'm really pleased that I joined up to it as being so few in numbers every result must count.

So after filling out some agreement forms with one of the leads of the Study, Tony, the tests started. A really nice lady called Eva was doing these for me and we did all the tests that I've done before along with a new one. This new one is the one I'm going to try and go into detail with...

It's a picture of the eye retina, an image of how it attached. Not only can these images pick up a surface view of your retina it can see through the retina. Imagine cutting through an onion and seeing all the rings sideways, this is exactly what they did with my eye but just with images! What is funny about this is that it's a really new machine and it's only recently that eye specialists have seen this part of the eye like this. So all these experts are only just seeing the thing they specialise in for the very first time completely changing what they think about the retina.

I should be getting some of these images emailed to me by Eva so I can upload them up here and really until I can refer to the images it will probably be incomprehensible to try and explain what the results are without them. Basically however I'm told that they can see the cells disappearing towards the peripherally part of my vision (hence in the dim/dark I'm pheriperally blind) and the centre part of my vision is still perfect.

When looking down at the ring (you can look at the existing photos for this) the white ring is actually dead cells that haven't yet dispersed and vanished and are in the doughnut shape that is my blind spot/shape. The photos from yesterday show a much fainter white ring which shows that all the dead cells that are not doing anything anymore are slowly disappearing.

Just before lunch I got to meet Andrew Webster the consultant and he was sounding very positive about the study. For the very first time I have been told "I would be very surprised if we did not have a cure in your lifetime".

This is actually quite a big deal for me. I don't really think of cures, I'd rather be pleasantly surprised to hear there was a cure rather than constantly wish for one and then be disappointed. So to hear that things are promising is kinda weird. I was also told that they have now been given funding for a 3 year study into gene therapy where they hope to be able to halt the degeneration process - not cure it but at least stop it from getting worse. So, basically wow. I'm on the list to be contacted to see if I want to participate in this trial, we'll see about that I guess.

Afternoon:

So this was the last test that takes 4 hours. I was so tired after this test that I didn't even bother to ask what the results were. The test however was me pressing a button whenever I saw dots of light - 8 times with each one lasting approx 5-8 mins. Then I had to sit in the dark for 40 minutes whilst my eyes adjusted and then had to do the whole thing again in the dark. Boring and tiring.

After the last test however I got to meet Tony again along with a man called Zubin who did all the tests 5 years ago that Eva did for me this time. He was great and really explains everything very well. Zubin however started asking if I could perhaps help with writing the letters when the results of the entire study are finally completed. I of course said yes and was majorly honoured to be asked. It may of course not happen, but it's still pretty cool!

I also have had it confirmed that I defs do have Ushers Syndrome Type 2a (it's the 'a' that's new). The most common type of Usher and my sister has also been given the same diagnosis. Isn't it strange, they couldn't confirm this last time so it just goes to show that research does work!

All in all however it was an interesting day, I'm glad I don't have to do as many tests each year but I do feel incredibly proud of myself for taking part. Every little helps after all!

Look into my eyes

So for this entry I've done a bit of work to the blog and added a few features.

If you scroll down to the bottom of the page you can now see pictures, and before you start thinking they are pics of me, well in some ways I suppose they are.. but pictures instead of my eyes!

Test results from previous years. I try to keep all letters and results together and whenever I go to an appointment at Moorfields Eye Hospital I always ask for copies of all the reports/results. I do have more somewhere but what with the move I think they may still be in a box somewhere. Uploading them turned out to be easier than I thought it would be but hopefully they will be interesting for anyone wanting to compare results or just see interesting pics and diagrams..

If there is anyone else who suffers of Ushers Type 2 who also has results like these I'd certainly be interested doing a comparison.

I'm going back to Moorfields on Wednesday next week which is for the 5 years on with the Ushers Study that they are running. Hopefully I'll get more results then and upload them too.

Getting all the documents out again made me read through all the letters I've received over time and one thing I had forgotten is the exact details of the chances of having a child with Ushers. Apparently the chance of being a carrier of the gene is 1/100. Being a sufferer myself I will defs pass on the carrier gene which would mean that if Mike just happened to be the 1 in 100 it would then mean a 50/50 chance of having a chance of a child with the syndrome. All in all that's a 1/200 chance of having a child with Ushers so not bad at all!