Saturday, March 24, 2012

How to study with low vision

I have returned to uni this year to study my masters, and I have been having trouble getting back into the rhythm of it all. I study via correspondence, so I do not have to attend lectures, and have all my notes online. I find it hard to read substantial amounts on the computer as I get eye strain and the glare hurts my eyes, plus I have a highlighter addiction and I like to do that on paper (obviously). I have been printing out my notes, but struggle to read them as I have to put them up close to my face and concentrate extra hard, so in turn I lose interest quickly.

I have a hand held magnifier to read paper documents, but I find it quite hard to use, as you have to move it along the line you are reading then when you get the the end to go to the next line, I get confused and re read the same line. It slows down the process of reading and gets quite frustrating. Not to mention if I want to highlight I have to move the magnifier out of the way and then find it in the smaller font. All in all, I don't find the hand held magnifier productive for studying.

So where does that leave me? I've contemplated printing off the documents in larger fonts, although they are quite substantial in length already and I'd use hundreds of pages of paper.

The issue is causing me to avoid studying because it frustrates me and I end up with migraines and eye strain.

Any suggestions?

Tuesday, March 20, 2012

More to add for "not just a vision issue"

I've had an overwhelming response from my post "Not just a vision issue" so I have put together a list of links that some of you might find useful for counselling, psychology or even just to have a chat. These are all Australian organisations and if anybody has any from overseas please share.

Most importantly, stay positive and you are not alone :)

Lifeline 24 hour telephone support - 131114

Beyond Blue - Not just Depression but anxiety, bipolar disorder and other mental illnesses
Beyond Blue

Headspace - Youth Mental Health for people 12 to 25 years old

Monday, March 19, 2012

Seeing sunglasses

I made one expensive purchase last week and I am so excited about it. I have the trouble of not being able to wear sunglasses outside when I am at work etc as I need my glasses to see in the distance. I can't wear contacts to work because then I can't see what I am doing up close. So I finally had a smart thought of getting lenses put in a nice pair of designer sunglasses.

I went to my optometrist to find out if there is a particular size I can get, and he told me "just not too big". Of course I wanted the biggest glasses I could find!! I ended up picking a gorgeous Gucci pair.

They are the best thing yet! I can go around looking stylish and can see at the same time! The funny thing is, I thought I bought a black pair, but when I looked at them in the sun they are blue!

I highly recommend for anybody that hasn't yet done so to get your lenses out in sunglasses, especially the young gen who don't like the glasses that tint in the sunlight!

Thursday, March 15, 2012

Not just a vision issue

So it’s taken me a while to be able to bring this up on here because it’s quite a complicated topic. Not only was I diagnosed with stargardt’s disease, but I have slowly developed an anxiety disorder which can be attributed to my diagnosis.

It is such a hard thing to deal with when you  are young, feel like you are in your prime and your life is just about to start, and bam, you’ve got an incurable disease that you can’t hide from because it’s in your eyes. I will admit I act quite tough about the situation but I definitely have my low times over the issue and I let myself have a cry over it before I tell myself to harden up and that I have a whole life to live for.

Being told you can’t see well is such a blow, even if you realised it prior, but I started doubting myself in so many ways. It went from not being able to drive, to being scared to be in a car because it is hard to read signs and see what’s ahead of me.

As a person who always has to be in control and needs to know EVERYTHING about what is happening to me and in the world, I found it quite confronting when I was told of my diagnosis. I was scared to go out at night because I felt I couldn’t see and I was in total darkness, whereas I think this is partly psychological as my EPS study showed my night vision isn’t affected.

I think there is not only the issue of dealing with vision impairment but also the other issues that arise with it; it’s not just about finding ways to get around or ways to work, but also how it affects us psychologically, because I am sure I am not alone with this. Not only am I dealing with my vision impairment, I am also dealing with a severe anxiety disorder that is life limiting. Double whammy or what.

So I encourage you all to speak out because we are in this together, and nothing is more helpful than hearing that someone else is experiencing the same thing.


Dr. Terry Diamond, who works in the same hospital I work at, is running 7 marathons in 7 days across Australia next week. He is doing this to raise money for the disease Retinitis Pigmentosa, which is similar to Stargardt's in that it is a retinal disease that causes blindness. He hopes to raise $100,000 for stem cell research for the disease and related diseases.

Here's the link to donate and support!

The Eye-Con Run

Friday, March 2, 2012

Gene Therapy

I was kindly sent a powerpoint presentation from a university in the Netherlands about recent studies of gene therapy for Stargardt's Disease and another genetic disease. Coincidentally, I have been working with a dutch medical student (who is a great friend!) and we had some fun translating the presentation into English for you all to have a look at.

Please be mindful of the translation!

Gene Therapy Presentation UMC St Radboud