Stuff I've learnt from Twitter!

I've been following the Foundation Fighting Blindness (@gihtblindness) on Twitter over the past few weeks. This weekend they have held Vision 2011 conference in the US. They have been updating their posts regularly and I have found out some interesting facts. The following are the tweets that I found really interesting:


1. "Q: animal trials - any reversal of vision loss 4 Stargardt? A: going that direction, but nothing yet showing definite restoration."
2. "Dr. Jacque Duncan (involved in retinal disease clinical trial) said that retinal degeneration is usually slow so it's hard to detect changes in 2-3 year studies."

3. "From Stem Cell session panel - Must easier to save retinal cells than replace them."

4. "Gen etc testing and thorough exams important because many diseases look alike.. Cone rod, Stargardt, Best Disease can look similar."

5. "About 50% of cone rod dystrophy caused by ABCA4 - same gene that causes majority of Stargardt disease."

4. A quote from John Wellner - "It's a great time in history to be blind; way better than the 1400's". You'd hope so!!
The link to the Foundation Fighting Blindness is below.


Foundation Fighting Blindness

They have a great wealth of information and are a great foundation so check it out.

A 4 year old could colour in better than me!

I spent my afternoon at work making some artistic labels for my folders, and decided to do some block writing with a highlighter border around the letters. To my horror, I couldn't see the lines I was trying to colour within! I drew the letters with difficulty then used my permanent marker to make them bold, and I was colouring in worse than I used to in kindergarten! I missed spots and went out of the lines and it looked terrible!  I then tried to colour around the letters in pink but found that wasn't working for me either. So instead I just coloured over the whole thing.

Luckily I saw the humour in the fact I can no longer colour anything in! Well not within the lines anyway! I laughed to myself for a while and was quite proud of my finished product after it made me feel as though I was cross eyed! If anybody asks, though, I might have to say my little cousin did t!

Everyday I find little things that have gotten harder to do, but in the scheme of things is it really a big deal if I can't colour in perfectly? Maybe I can be the new Picasso and take abstract to a whole new level!

Keep smiling everyone :)

Update on the ACT embryonic stem cell trials

So we are all aware of the upcoming trials by Advanced Cell Technology to see whether Stargardt's and also Dry Age Related Macular Degeneration can be treated with embryonic stem cells. ACT released more information a few days ago about the upcoming trials involving 12 patients for each condition.

The phase of the study isn't actually testing whether using the stem cells will have any benefit, rather on the safety of using such technology.

The am of the treatment is to replace the malfunctioning RPE cells in the macular with functioning cells to halt the damage being done.

Hopefully the first phrase of the trials are successful and safe, with minimal harm being placed on the brave Stargardt's patients being involved.

Check out more information on the links below.

Red Orbit

UK Mail online

Google News

iPhone Magnifiers

I am constantly on my phone and download new apps every day. I'm also constantly texting and for a while now have been having trouble seeing the text on my phone! 


Having an iphone has been a great benefit for me. I finally figured out how to make the text message font larger, and I am currently on the 20pt text which is only the first magnification and it goes right up to 56pt. I could probably use it a bit larger, but I can't face that fact yet!!


I've also found a few apps that magnify text using the camera on the back of the phone. I currently have "Tap Magnify" and "Easy Reader". I personally prefer the "Easy Reader" as it uses most of the screen and uses the flash to illuminate the text when it magnifies. The only thing is it is quite slow to focus. Since I am still waiting on my equipment this is an easy alternative until I get a proper hand held magnifier. Best of all they were both free!! 


Has anybody else found any apps useful?

Help with Adaptive Technology

I've decided to try and organise purchasing my own adaptive technology for work and studying as I seem to just not be able to make it happen any other way. Since I am in between jobs, I find it really hard explaining to new or prospective employers about the condition and what I need to help me work. I also sometimes feel that some workplaces see it as a hindrance, so if I can have all my equipment and bring it in on day one, it just seems so much easier.


One thing I am really looking forward to getting is a hand held CCTV. I am also super keen to purchase one to help me with studying, as reading my textbooks are like torture and I constantly get a sore neck (which serves as a great excuse to get a massage). I was lucky to have Vision Australia lend me one to try out previously and have picked the Compact Plus mostly because it has a big screen and can magnify up to 10 times. 


Quantum based in Sydney, provides such equipment and the one that I am keen to get my hands on. Not only do they have my CCTV but also ZoomText and other adaptive technology like larger CCTV monitors and equipment that converts text to speech. 


At the moment there are only a few things that I feel I need to help me feel more comfortable at work, yet this website has so many other gadgets and software that would be beneficial in the future for me and would be beneficial to those who are at a later stage of the disease.


Check out their website. They are very helpful!!


Quantum Adaptive Technology

Blinding Darkness

In the past few weeks I have noticed that in the dark I can see less and less. It's starting to scare me just a tad. 


I find it quite confronting looking ahead and not being able to decipher what is happening. It seems like all the lights merge together in a big blur and I have to concentrate very hard to figure out what is going on. All I want to to is be able to see the distance clearly.


Another thing I noticed a while back was the fact that when I look up at the moon I can't see it! If I look above or below it I can see it in my peripheral, but you can't see it very well because it's so far away. I want to be able to look up at the moon again!


This has brought up, for me, how badly I want someone somewhere in the world to find a treatment and help us all out. It can be quite distressing at times, and I'm sure I'm not the only one that feels scared and helpless and quite stressed about the situation. 


So once again, I'm hoping and have my fingers and toes crossed that a breakthrough is made very soon and we can all celebrate!

Free Glasses!

This is for all the Aussies reading my blog - Free glasses!!


A friend informed me of a website that were giving away free glasses, lenses and all, and all you need to do is pay the postage. I was skeptical but since I have sat on my glasses and they are lopsided I though it was worth a try since the frames that I choose tend to be the most expensive frames available. 


All you need to do is 'like' their Facebook page and then you can go to the page that says "Free Glasses". There are codes for the specific dates that they are giving away free glasses. There looks like there are three more days that you can grab free glasses.


I picked out a nice pair of Guess glasses and received them about a week later and they were perfect!! So check out the link below and grab your free glasses! I am definitely going to get another pair!!

Clearly Contacts