It's Been a While

Since my last blog.. a lot has happened, both good and bad in regards to my vision. I should probably start off with saying that since my last post, I completed my A levels and now at University studying Economics. I completed A level Business, Use of Maths and Economics, all at grade B which I am so happy with. I'm now in a fantastic Uni, but there has been a lot to learn switching from college to university. Studying at University is a completely different experience to that of school or college, but is, in my opinion, far more supportive of students with disabilities. 

What do I mean by this? Well, unlike school or college, my University has a dedicated team to specifically help those with disabilities, no matter how profound. They establish what we need in order to help aid in our learning, and this is done at the beginning of the year with a small assessment. They ask us what our condition prevents us from doing, and how the University may help us. This includes stuff from lectures, to tutorials to end of year examinations. So for me, I am eligible for all lecture slides and notes in advance (if available). Seeing as in my first year course, there are 500 people on my mandatory classes. So finding a good seat where I can clearly see the board is pretty hard! So this is where my tablet comes in handy - I can load all notes and powerpoint presentations that are sent to me onto the tablet and I can follow the lecture with relative ease. I also have 25% extra time for all exams, including mid term exams, and am eligible for extensions should I need them. Thus far, I haven't needed it as I am on top of all my studies, but the option is also there. I can ask for specific fonts and sizes of font that the exam is written in, how the exam is laid out, plus the use of a computer so I can write my answers onto a Word document, to size the text to my liking and have a specific font so it enables me to proof read my work more effectively. Because up until now, I have been able to hand write all of my exams, but seeing as my vision has deteriorated, I am now unable to read most kinds of handwriting, including my own. Hence why the use of a computer is necessary.

Though the main lesson that I have had to learn is the fact that I have to spend more time than others going over lecture slides and notes to consolidate my knowledge, whereas before I could attend a lesson, do the homework, come back to revise and I'd know what I was doing, whereas now the speed of learning has accelerated and I must put my own time into learning. Which is the whole point of Uni! So I think I'm doing ok...!

Furthermore, I have had tremendous support from Student Finance England, who provide support to those who have disabilities as well as providing financial support to pay for my tuition fees (which other English students have to do). This involves a meeting with a representative of theirs, and there they consult with me and recommend products that the Government will pay for to aid me in my learning. I had a £1,500 allowance which was superb, and not to mention the man also managed to work the loopholes so I could be entitled to more equipment than I should have been. I was given a brand new laptop, printer, programs to enlarge font on my computer, along with applications to change the style and size of the cursor among other things, an electronic magnifier which has proven exceedingly useful for reading menus, prices etc, the latest version of Microsoft Office, and finally a ZoomTwix, which helps me to read books which are glossed or aren't available in large print. Very useful for reading dictionaries!! Here's a link so you all can see what the ZoomTwix and the electronic magnifier looks like:

http://www.humanware.com/en-canada/products/blindness/reading_machine/_details/id_243/zoomtwix.html

http://www.humanware.com/en-united_kingdom/products/low_vision/handheld_magnifiers/_details/id_164/smartview_versa_handheld_electronic_magnifier.html?CAPCID=22570671898&gclid=CPb10PiSrrwCFeKWtAodEzEAog&CA_6C15C=1893276066

This website - Humanware - is absolutely fantastic. Though the products are expensive, their products have helped me to improve my academic life, and no doubt they will also help me in my professional career. 

So.. the final update. I guess you're all wondering what my visual acuity is now? Well, for my first annual appointment at Moorfield's Eye Hospital with Prof. Moore, I now have a visual acuity of 6/24. Now I don't think I've properly explained what this means. So this means that what I can see from 6 metres away (i.e. someone with impaired vision) someone with normal vision would be able to see from 24 metres away. So in a year, my vision has declined by one line of the visual acuity chart (or from 6/12 right eye, 6/18 left eye). 

But the news was not all bad, Prof. Moore told me that I would now be "on call" for some testing, as they have now been able to isolate photoreceptors in the eyes (cells that pick up light), and they wish to see how people who have degenerative conditions are affected by different strengths of light (seeing as I'm sensitive to glare, natural light and snow).

Furthermore, there was encouraging news that there are ongoing test and positive news coming from patients being treated for macular degenerative conditions through the treatment of stem cells. So hopefully they can reverse the damage that is being done over time by my faulty genes. Also, they are also starting testing drugs that will reduce the acceleration of the condition, in the hopes that people will have a longer period of time to adjust to, cope and spend time with their remaining vision. 

Lastly, they are hoping to code my genes with the blood sample that was taken, which would have cost us £1,000 to have done privately. By doing this, they are hoping to find a specific code that is correspondent with causing Stargardt's Macular Dystrophy and thus will enable me to be eligible for testing or even cures/medication as and when (even if) they become available.

Finally, the atrophy is not spreading, which is fantastic news in itself, and the speed is slower than they anticipated. But no matter what, I will lose my central vision all together at some point. But no point lingering on the sad, when so much good has happened in the last half of last year and the beginning of this year! I can still manage my way around and study, and all I want to be able to do is to live independently in the knowledge that I am safe and I have support should I need it. Also the fact that with my studies, I have the support I need to do my best and come out with a good degree which will enable me to apply for a good job. Keep focussed, keep going!

Here's to a fantastic year!

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https://www.facebook.com/HarrietsEyes