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!

Don't forget to like my facebook page as well to be updated when new posts come out! Find the link below:
https://www.facebook.com/HarrietsEyes

Staying Strong

Happy new year! I know it's been a while since I last posted a blog, but it's taken me a while to think about what to actually write about and how to say what I want to. 

I went to Moorfields for more testing on the 30th November 2012 to help in properly diagnosing what I have. The good news is that they know for sure that I have Stargardt's macular dystrophy. The bad news is that I've lost a considerable amount of time. Remember that I originally said that they predicted me to have my vision for another 10-15 years? Well, I now have a maximum of 5 years left, which, Professor Moore said, would be highly unlikely that I have even 5 years left. So I guess you all know why it's been such a long time, in respect to how long it's taken me to write this. Just the shear loss of time I have left with my vision is just ridiculous! But, I'm coping and I'm not letting it get me down. 

If I let this condition get the best of me, then I won't be able to make the most of what I have left of my vision. I won't be able to enjoy my life, and make the most of the opportunities I get if and when they're presented to me. I know I haven't made the most of the opportunities handed to me in the past, but things have changed now, and if I don't take hold of opportunities with both hands, I may never get another chance. Just because I'm losing my vision, doesn't make me any less of a person, it doesn't stop me from living my life like everyone else. Sure, I can't drive a car, fly a plane or be able to read, but I can still do so many things other than that. I can still go out clubbing, I can still spend time with family and friends and feel normal and I can still look after myself. Above all, I can still listen to music. Music really does help me to express how I'm feeling in a very indirect way, and it has helped me deal with issues in the past, and it will help me in the future. Without music, we wouldn't have clubs, we wouldn't have festivals and above all, it wouldn't help connect people. I've made so many friends just because we have similar tastes in music, and that is a beautiful thing, in my opinion.

I think the most challenging thing that I've had to face in the past few months is to stop thinking about all of the negatives, but think more so about what positive things I still have, and what could come to me in the future. I can still go to university and study economics, I can still get a job despite that I have a disability. I know that the Universities that I have apples to will accommodate for my poor vision, and will help me through the condition and businesses won't be allowed to not hire me just because of my vision. Sure they may not like it, but it still doesn't take away from the fact that I may be right for the job and I have the necessary qualifications to carry out my job. 

But I have felt stranded and lost, with no sense of what I should do to help secure my future and what I can do to help myself. I don't even know what I need! My condition isn't so bad that I need a guide dog. but then it isn't bad enough to be registered as disabled, where, in fact, I am disabled. My vision will deteriorate and there's nothing I can do to stop it... Other than stop eating any foods that contain Vitamin A. The only thing that I have found helpful is the extra time in exams. Since I study subjects that either require a lot of reading in exams, or have very short time periods, having extra time has really benefited me. If I feel pressured for time, then my vision becomes more blurry and I take less information in, but with the extra time, I know I have more time, I can take my time to read case studies or data and I have more time to read the questions properly. Hopefully, with results coming out in early March, that I've performed well. 

But there is hope! Recently scientists managed to completely regain the sight in blind mice. Even though their condition isn't the same as mine, any developments with regards to eyesight will have massive benefits to other ongoing research on treating other conditions. Furthermore, there are also trials going on which will help patients with Stargardt's disease, which have been in progress for nearly a year now. A link can be found detailing the research can be found at the end of this blog. 

However, I have recently noticed minor changes in the clarity of my vision. Whilst revising, I became exceedingly reluctant to read my own handwriting as I couldn't tell letters apart, and also the fact that I can't see the lines on my paper, meaning that my writing is all over the place - above the line, below the line, in the middle of the line. It's very annoying, especially because I like to have nice, clear and legible notes for revising from! Furthermore, my colour vision and clarity of vision is also degrading, especially in regards to video gaming. Yes, I'm a self confessed game-aholic and I love playing games right the way through, especially the Batman Arkham Asylum series. But recently I've noticed that I can't see small characters as well, for example, the Halo 4 multiplayer rooms, and also because of the background colours combined with armour colours are so similar to the background! I was lucky if I managed to shoot someone. But still, I managed to make the most of it by running away from my friends who were trying to kill me for easy points. (See? Negative into a positive! But I do admit I got a bit annoyed because I couldn't actually play properly.)

Finally, a quote to end this blog: "To be blind is not miserable; not to be able to bear blindness, that is miserable." - John Milton.

Linkshttp://www.guardian.co.uk/science/2012/jun/04/stem-cell-first-human-trials
http://www.mrc.ac.uk/Newspublications/News/MRC003363

Here is also a Facebook page, where I shall also post links of my new blogs to:
http://www.facebook.com/HarrietsEyes

Letters

So it's been about, what? Two weeks since I've written anything? That's probably because I thought that I wouldn't want to bore anyone about the various hospital trips and tests that I've done. However, I got a nudge from Moorfields this afternoon about my having Stargardt's. 

My grandpa came home today to drop the dog off from his "sleepover", and when he got through the door, he noticed that I didn't pick the post up this morning. I sat down and noticed that there was a note for me, in a brown envelope, must have been important then! But just a little letter from Moorfields stating that I have to repeat a test I did in Southampton, which caused me to initially think I had Best's disease. Unfortunately, no dates were enclosed, so another letter will surely come through the door at some point!

But one thing that struck me was that the text was much larger than usual, which was a blessing as I didn't have to turn the lights on full blast so I could read it! But that really shouldn't have surprised me, seeing as Prof. Moore does work for a low viability department, which of course, I go to. It was just so nice to be able to read something where I didn't have to squint, move the paper around near a light source to enable me to read it. I read the letter in normal light and didn't have a care in the world!

But this made me think today, I'm in my final year of college, and hoping to go on to University next year, should I ask for extra time (25% extra time)? I've been fine for the past 2 years of sitting exams with noticeable decreased visual acuity but with my last year coming up, should I let an opportunity like this pass by? Something I have to think about a little longer methinks.

Now college is finally in full swing, in 2 of my 3 classes, I have no established myself to sit at the front of each class, which makes life so much better! I can read the screen/whiteboard with ease and I don't have to be a nuisance and ask neighbours what's written. I've also notified my tutor that I have an impairment, which has helped a great deal. I had one of my teachers specially make a black and white booklet for me to help me, and I've had a conversation with each of my subject tutors about lighting, text sizes etc which is even more wonderful. Having support from my tutors makes me feel less inept and more capable of doing normal things where eyesight is considered. However, I still have to pull out a chair from my dining room if ever I want to be able to read anything when playing games on my xbox... namely Batman of course!

Lastly, to date, I've had a total of 850 people read my blog in the past month of writing my blog. That may not sound amazing, but for me, it's incredible! I've had so much support from everyone, and has inspired me so much to write about my experiences, and I've even considered writing for my college paper and maybe do something for charity next summer. Thank you all again, so much! Every read counts and spread the word!!

When vision becomes blurry...

As I said at the end of my last blog, I will be talking about how I first noticed everything, hospital trips, consultations and tests that had to be carried out in order to get a diagnosis. But seeing as my last blog was pretty long, and I don't want to constantly write long blogs, I think I'll talk about the major... "mishap(?)" with my vision and write about the others when I feel like it... or when I get bored.

What clearly stands out in my mind was when I was asked to read a number plate at 20 feet away from a car on my practical driving test. The simplest part on the driving test for most people, but proved to be quite the challenge for me.
By this point, I had already been down to Basingstoke Hospital, to the Ophthalmology department. When I was there I had some very basic checks and completed 2 visual acuity tests. I was told confidently by my doctor that I would be able to read the number plate. (Remember my last blog and the visual acuity chart explanation? Back in June this year I was at the same level as I am at now... There wasn't a chance in hell that I was going to read that number plate! But I didn't know that...). So you could all imagine how I felt when leaving the hospital that day; elated and excited about my forthcoming driving test despite the fact I was suffering with what I thought was minor visual problems.
So, back to the dreaded number plate during my practical test. There I was, pleased as punch that I finally managed to get past the annoying theory test, and onto the final leg of my journey, finally I would be fully independent and drive wherever I pleased if I managed to pass my test. I felt all of these feelings right up until the question "Please can you read the number plate of the car in front of you please?"
To be completely honest, I had completely forgotten about this weeny part of the test. I was concentrating more so on what "show me, tell me" question he would ask, or what manoeuvre I would have to do. I assume that's what other people did on their test as well? That, or dying of nerves.
 I stood there, completely frozen and then tried my hardest to read the number plate. Nope, not a single clear letter on the damn thing! So I said "No, I can't see it". Not really to my surprise, the examiner looked something close to shock. So, we moved forward slightly. "How about now?" He asked. I replied "No" and let out a sigh. It was suddenly dawning on me that I wouldn't be able to take the test... I knew what the consequences were if I was unable to read a number plate. So, what I thought was my last chance, he moved me to another car and asked again for me to read it. Again, no. I started to hear the purr of engines and slamming of doors of the other students who had already managed to read their number plates and done their "show me, tell me" question.
And I was just standing there, feeling and probably looking like a complete retard, as I have never known or even heard of anyone who has failed their driving test on the eyesight. The examiner looked either disappointed or sad as he led me back to the test centre with my driving instructor. By the time we got in, and the examiner explained that he would have to measure out the exact distance from the number plate I had tears in my eyes. I had never imagined it possible that I wouldn't be able to drive. It didn't seem possible, but, alas, it was. As we arrived back to the test centre, the examiner got his manager to get the measuring tape so they could measure out 20 feet from the number plate. I was left alone with my driving instructor for about 5 minutes. I just felt hopeless, stupid and useless because I was be the first person ever (for most people) to have failed their driving test on the eyesight. I hadn't even reached that stage yet, but I just knew it.
The examiner came back and led me to the end of the measuring tape. The manager was blocking the way of the number plate. With good reason as well as I was trying to read the number plate so I could just get out on the road. I asked my examiner if this was my last chance and he just simply nodded. He offered me a piece of paper and pen which could maybe help me work out what I could see. I squinted, leaned forward, looked at different angles, everything just to try and work out what I could see. 
At this point I realised how far away 20 feet was away from the number plate. I'm the kind of person who just can't judge distance, if someone asked me how far a yard was, show how long an inch is or even a mile, I wouldn't have a clue on how far to guess it by!
I wrote down what I thought was a Y in the number plate and then decided that enough was enough. I burst into tears and finally admitted that I wasn't able to read the number plate.
I was escorted back to the test centre, and back to my driving instructor. The examiner handed me the examination sheet which they use to determine if a person passes their driving test or not. There a cross in the box saying "Eyesight - Major/Dangerous".The examiner said "I'm so sorry, but I can't do anything to help you to get into the car to take the rest of your test, it's too dangerous and against the law." My driving instructor tried to reason with him, but, understandably, he wouldn't budge.
We walked back to the car, I got in the passenger side and I was driven home, I phoned my mum to tell her the bad news. As she picked up the phone I tried to say "I failed", but I was crying too much. Luckily she twigged on to the fact that I had just failed my test. She asked me what happened, and I told her plainly that I failed my test on the eyesight. My mum just replied that she didn't realise how bad my vision was.
As I got home my mum was already at the door, and I cried even more as soon as she hugged me. After my mum and my driving instructor spoke briefly, my driving instructor drove off and mum took me inside.
A couple of days later I received a letter from the DVLA, telling me that my licence is now null and void and should be returned to them as soon as possible. Well that's a bummer when it comes to going out, as that was my main source of ID. I'm definitely not gong to take my passport out! That's far too valuable! But that's a topic I can discuss in a later blog.

According to law, every driver must be able to see at least 20 feet in front of them. If they can't meet these requirements and were allowed to drive, they would be considered to be a liability when they choose to drive.
My vision isn't so bad that I can't see a bus, car, or even a person. But I can understand why it would be best for me not to drive. The reason being is that I can't see the reverse headlights go on when someone wants to reverse, for example. I'd probably just plough straight into the back of them. Reverse slightly, let them go. Jump out of the car, say sorry and continue on my way. There was also a time. according to my dad, which I don't remember, when we were in the car and in a tunnel. I could see one car in front of us, and looking around I couldn't see any others. But as we came out of the tunnel another car mysteriously came out alongside the one I could see! It must have felt like the batmobile was next to me and it just came out of nowhere! Sadly, it wasn't the Batmobile and it didn't come complete with Christain Bale in the Batsuit, just a sneaky car with a sneaky driver!

In some ways, I'm glad that I can't drive, and in others I'm not. For example;
I'm glad that I can't drive because it'll save me a lot of grief with trying to find the best priced petrol, paying out for a car, insurance, road tax and MOTs. Also having to pay for any repairs that the car may need would also be a nuisance.
But I'm annoyed that I can't drive because I already know how to drive in effect. I spent over £700 in learning how to drive, and now not being allowed to drive is really annoying! I mean really, learning how to properly use clutch control and not stall when on the move is a talent which I intend to use! It's not a very useful one... but a talent none the less!
Yes, I can't get to work without my mum or boyfriend or friends driving me there, or being given money to pay for a taxi to get places, but I have a one up over all of you who are able to drive

I don't have to worry about drinking and driving ;)
And so much for not wanting to write a long blog!

Stargardt's and general information.

As the title suggests, this blog is going to be about an eye disease called Stargardt's disease. 

But before I go on to talk about the disease and my experience with it so far, I'll tell you a little bit about me.

My name is Harriet Doran, I'm 18 years old, and I'm currently living in the UK, Hampshire. Within the last 3 days, I was diagnosed with this condition at Moorfields Eye Hospital in London. I'm not going to call Stargardt's a disease, because it isn't something you catch from someone else. You're born with it, and it slowly decreases the clarity of your central vision over time. 

I'm not an expert on this topic, and this blog wasn't designed to give the ins and outs of the genetics of the disease or anything else "technical" related to the disease. However, I will provide links to help you understand the general and known effects of the disease and anything else related to my blogs. But seeing as this is my first blog, I shall tell you all about the outline of the disease, and things that are worth knowing the most.

Typically, the disease is noticeable before the age of 20, but it is most commonly diagnosed between the ages of (I believe) 9 and 13. This condition cannot be corrected with glasses or laser correction services, as the condition does not affect the refraction of light into your eye. There is a tiny, tiny area at the back of your eye called the macula which is responsible for central vision. It also helps you to distinguish different colours and helps you to pick out fine detail. When the macula is damaged when the cells don't work properly, the centre of an affected person's vision become blurry, filled with black or blurry patches. The disease, in most cases, can render a person "legally blind" in a short time. However, since the disease varies considerably from person to person, it is hard to tell when and if the person will become blind or not.  But in my case, Prof. Moore has predicted me to lose my vision completely within 1 to 15 years.

A person is considered to be legally blind when they can only read as far as the top letter on a visual acuity chart. Currently, I can read 4 lines down, meaning that I am not allowed to drive. Here is a picture showing one of these charts, and notice where I can read, where I'm predicted to go and where I should be able to read in order to drive. NOTE: I can read all of these letters on this picture, but these visual acuity charts are placed 14-20 feet away from a patient when being tested. Not to size.

 

When I was told that I would only be able to read the top letter if I were to become legally blind... I was stunned. How would I be able to live in a world where I could only be able to read letters that size? How would I get around, read and do normal things like my food shopping and cooking? What makes everything even more terrifying is my age. I'm only 18. Seeing people driving around, passing their driving tests and not having a care in the world. That is a dream and experience I may never have. And if I'm lucky enough to receive any treatment that could regain my already lost vision, I'm going to be 40 odd! By then it won't be worth learning how to drive would it?

If I am to become legally blind in 15 years, I'm going to be 33. That's just over a third of my life gone. If I get married, I won't be able to see my wedding dress properly, or where I get married properly. If I have a baby, I won't be able to see their face, same goes for my boyfriend. I'm lucky enough for now to be able to see his and my friend's faces... but I doubt for much longer.

 For the time being I can only fully focus on one feature on a face. I mostly look at the eyes, but if I can't hear someone I look at their mouth to get a better idea of what they're saying to me. All of the other features on the face look like they have skin pulled over the main features of their face.. like they're wearing a morph suit. This is what I can sort of see, the mouth, moustache and edge of the suit would be more defined when I see it... but I had to enlarge the photo slightly.

That is how I see someone if I look at their mouth. That's what I have to live with every day, and it isn't going to get any better. In fact, it will only get worse.

Another issue with this condition is that it takes a long time for me to adjust to darker rooms when coming out of a light area into a darker one. This is extremely frustrating for me when I'm at work as I can't see people's faces when I'm adjusting to the light changes. If I can't see them, how can I serve them their food quickly? I'm lucky enough to have considerate colleagues who help me in any way they can, and help me when they see that I'm struggling to find a customer, a button the till or even a spirit hanging on display. 

Finally, the most annoying thing for the moment, especially when I can't distinguish like colours, such as a light blue and pale pink/purple is when I'm in college. Learning from overhead projectors and PowerPoint presentations proves to be a challenge every college day. Especially when the light  coming into the classroom from outside also brightens the board. It makes it that little bit harder to read what I'm meant to be noting down. However, I copy from classmates into our notebooks or ask the teacher to wait before changing slides so I have more time to question if I'm reading what I think I can see correctly, or to buy me more time to read the board carefully. This may not seem hard to ask for.. but being the only person in the class with impaired vision, and learning about it so late is quite a scary, and frankly, embarrassing thing to ask for. Yes, I'm a typical teenage girl who can be self conscious about the normal things... am I pretty? Am I overweight? But I've got an added thing... Will people understand what I'm going through? Do they think I'm "acting it up" to get attention? But I have to make the most of my vision whilst I still have it. I know I shouldn't be worried about what other people think of me, but it's hard to do. But I've only just started this long journey, so I have plenty of time to adjust to people who may not be considerate enough to acknowledge that I, in effect,, do have a disability.

Again, I will have to cope with the condition that I am living with, and I know that I'm strong enough to ignore people who just don't "get" what I have to live with.Thank you to everyone who has spared the time to read this blog! Hopefully everyone can understand the enormity of being diagnosed with this condition, and I thank those of you who have helped and hopefully in future will help those with visual impairment or any other impairment.

 In future blogs I'll talk about how I noticed the decrease in my clarity of vision and what testing I've gone through and my journey through hospitals to get the diagnosis I now have.

Thanks for reading!

Links that may be of use:

Overview of Stargardt's Disease:

http://www.rnib.org.uk/eyehealth/eyeconditions/eyeconditionsoz/pages/stargardts_disease.aspx

Visual Acuity tests:

http://www.nlm.nih.gov/medlineplus/ency/article/003396.htm

Moorfields Eye Hospital NHS

http://www.moorfields.nhs.uk/Home

Professor A. Moore at Moorfields Eye Hospital, London.
http://www.ucl.ac.uk/ioo/pdf/PI/Professor%20Anthony%20Moore.pdf