Grandma Glasses

I was walking outside today in the beautiful sun since we've had terrible weather in Sydney the past week, and I got a few funny looks from some young nurses. I realized that my small reading glasses were tinted so dark I looked like I had a pair of disgusting old fashioned sunglasses on.

Normally I'd get embarrassed about them because I think I look like my grandma in them and no one my age has to wear tinted glasses!! But I realized who cares? This is one of the only things I was told that could protect my eyes - keeping the sun from them. So I've decided I'm going to bring the daggy style in fashion!! Anybody want to help?!?!

Thank You

I just want to say a big thank you to everybody who has contacted me and supports this blog. I can not explain how much I appreciate your kind words and encouragement. I will do my best to gather information and get Stargardt's out there so hopefully in the near future we can have a treatment that is available to all of us.

You are all my inspiration just as much as I might be yours! Never give up on your dreams and what you have always wanted in life because this isn't going to stop you but rather make you even more determined to succeed!

Thank you again!!!!

Finally!

I have FINALLY received my magnifier! I purchased it from Quantum Reading Learning Vision in Sydney and I received it within a day! I am loving having my own Compact Plus I have been using at work and at home. I think a lot of people around the office are jealous of my new gadget! It has heaped me greatly with my everyday work so now I can read paper documents a lot easier. 


It was hard to get use to at first as you have to move it across the page but once I got the hang of it I was loving it! My neck is thanking me as I no longer have to bend over to read things. I can not wait to get the rest of my stuff. It has taken a while but I have finally made progress!


This is me playing with my magnifier at work!

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?