Sunday, December 11, 2011

Australia's contribution to Stem Cell Safety

I have been following the Stem Cells Australia website and there has been a study looking at the safety issues of stem cell therapy. I think safety is incredibly important as it is great when a treatment looks to be working, but if things can go wrong further down the track it can be disastrous. The Universities of Melbourne and NSW were apart of the study as well as the CSIRO (Commonwealth Scientific and Industrial Research Organisation). They found that some stem cells after prolonged growth can have genetic changes (like that of cancer), but the majority will not change. The study states that if the changing stem cells can be eliminated it would reduce further complications down the track.

Safety is paramount when dealing with the human body. I think I'd be quite nervous being apart of studies and I admire the bravery of those who do. Safety studies like this help eliminate adverse possibilities and I think it is promising that there is so much research focusing on stem cells.

Here's the link to the Stem Cells Australia website, with further links at the bottom of their page.

Stem Cells Australia

Xmas pressie for me

I've been a bit slack with posting in the past week, but I've been SO excited for Christmas!! I've already bought myself a pressie and am waiting for it to be delivered. Yep I gave in and got myself the iPad 2. I've never been so excited to get something and I can't wait to download all the books I've been itching to read and zoom them real big and lie in bed and catch up on what I've been missing. I recently bought a whole lot of books in my denial that I could still read, but I finally faced the fact that I can't and have to give them away. So I'm looking forward to using the iPad to read.

Another thing I can't wait to do on it (which is quite embarrassing) is play all my games that I struggle to play on my iPhone. I am currently addicted to My Town (I know such a childish game) and another game Temple Run. I really am a big kid! Having a bigger screen to play my addictions is probably only going to make my addictions worse, but nevertheless it will be fantastic!

Saturday, November 26, 2011


I've noticed in recent months that my senses have changed. I was once told by someone wise that when you lose one sense the other senses become more enhanced. I must say that I have an incredible sense of smell. I smell everything. It makes me quite nauseous at times. But I haven't always been like this. I can't use plates are glasses if they aren't washed properly because they smell. My bathroom needs to be so clean and disinfected because I can smell what has been going on in there! I can smell food from a mile away (good or bad), flowers and even rain!

I know what some of you might be thinking, and no I am not pregnant, but I hate to see what my sense of smell turns into then! I have found that a lot of smells are more pungent and even make me want to vomit. I wonder if this is because of my dwindling sight?

I have always had problems with my ears, but I have noticed that I do hear a lot of subtle noises. And I have noticed I have this habit of having a TV show on and I don't look like I am watching it (because I can't see it properly) but I am listening to it and picturing it in my mind. My boyfriend gets quite cranky when he wants to change the channel and I protest that I am watching it even though I'm not facing the TV!!

I think it's interesting how your senses can change and adapt to what is happening with your body. I have realised that I should use the sense I have and have taken to observing what things smell, sound or feel like when I get frustrated that I can't see the detail. You'd be amazed at the different light you see the world in. It smells fantastic!!!!

Brain chips to help the blind!

I was doing my usual lunchtime news browse and found an article of interest on brain chips. Apparently, a Utah University has developed a silicone chip that implants in the brain to help cure nervous system disorders like paralysis and blindness. It has been successful in animals and they want to trial it on humans.

I'm not sure how helpful this would be for Stargardt's but they are saying it could cure blindness. Another option to be followed!

Here's the link to the news article.

Brain chips could aid the blind, paralysed

Saturday, November 19, 2011

Aussie Stem Cells

There is a new Aussie initiative officially launched on the 10th November 2011 called "Stem Cells Australia". It is led by Professor Martin Pera in collaboration with various Australian Universities and Research Institutes and supported by the Australian Government. One aspect of their research is in human embryonic stem cells and their ability to become any bodily cells, which as we know is being trialled as a potential treatment for Stargardt's. They also aim to tackle ethical issues surrounding stem cells, which is sure to be an interesting debate!

As yet, there is no specific mention to Stargardt's or any ocular conditions, but it is a step in the right direction for Australia and for the possibility of treatments being made available here.

The website has a whole heap of information so check it out.

I am particularly looking forward to the ethical debates, since it is a potential treatment for Stargardt's and I know there are many groups opposing the use of embryonic stem cells.

Will keep all updated!

Stem Cells Australia

Friday, November 11, 2011


I have now known about my condition for two years and I feel as though I have accepted it. The funny thing is the people around me don't seem to have. It's like they don't want to accept that my vision is deteriorating and they pretend as though it's not happening or it's not as bad as it is. But if I can accept it why can't everybody else around me? I think it has a lot to do with my age - being young the first thing people say when you tell them is "can't you get laser?" This is one comment that is starting to bug me. If I could be treated do you not think I would have gotten treatment?!?!?! I think it's hard for a lot of people to understand because they can't fathom the idea of a young person becoming blind and it doesn't help nobody has heard of Stagardt's disease. I try and explain it as similar to macular degeneration, but as that is a condition associated with older generations people still struggle to comprehend.

I think it is hard for those around me to put them selves in my shoes and see what I can see. If you saw me walking down the street you wouldn't know that I probably can't see your face. It's as though to be classified as vision impaired or legally blind you need to have the stereo typical dark glasses, walking stick or guide dog.

It is hard to deal with the fact that you are losing your sight at a young age, but the best thing I have done is to accept it and take it n my stride. I can see the world in a different light, I focus a lot on the way things sound or smell, to make up for the lack of detail I can see. I do have the bad days and feel as though I'm struggling at my job and my eyes are strained and tired, but I do believe in the future there will be a treatment and for the time being I should embrace this experience. After all whatever doesn't kill you will make you stronger!

Thursday, November 3, 2011

Another potential cure by Alkeus!

I have come across another company looking into a treatment for Stargardt's Disease. The company is Alkeus Pharmaceuticals in the US. They have created new compounds to treat Stargardt's as well as Age Related Macular Degeneration. So far they have tested these compounds on mice with success.

They have a page where you can register to be apart of future trials and also a Stargardt's registry. The trials will take place in New York so it is a good excuse for a holiday! I've posted the link below so check it out and register!

Alkeus Stargardt's Registry

Tuesday, November 1, 2011

Vitamin A

I came accross an article published in 2010 by Ma, Kaufman, Zhang and Washington from the Department of Opthalmology at the Colombia University Medical Centre about a dose combination acting upon vitamin A in the retina. The article was quite interesting, having been conducted on a mouse model of Stargardt's disease. The study used a dose combination of vitamin A and something called C20D3 directly on the retina.

Lipofuscin, which are the yellowish granules, accumulate in the retina causing permanent damage. I'm no chemistry whiz, but from what I deciphered the study found that if you could stop the chemical reaction occurring that allows two separate vitamin A molecules to combine and cause damage, the retina would not deteriorate. Thus, they made a combination of vitamin A and the C20D3 character to stop this chemical reaction occurring.

The study found this to work in mice, and thus may benefit humans. Although this would not restore sight already lost, but it could prevent further deterioration.

It is early stage research but it is quite promising to know that there is another group of people researching Stargardt's to help find us a cure.

The details of the article are below:
C20-D3-vitamin A Slows Lipofuscin Accumulation and Electrophysiological Retinal Generation in a Mouse Model of Stargardt's Disease.
By Li Ma, Yardana Kaufman, Junhua Zhang and Ilyas Washington

Thursday, October 20, 2011

Eye Colour

I'm sure I read somewhere that Stargardt's or retinal eye conditions affect more blue eyed people than brown. I've tried to look up articles to see if my recollection can be validated, but I haven't been successful.

So just for a little experiment, I ask everybody who views this with Stargardt's or any other retinal condition to comment with their eye colour. Maybe we can discover something interesting!

I have dark brown eyes (and apparently the dark colour protect me from the sun). So what colour are your eyes?

I love ZoomText

ZoomText is my new best friend. After a long wait I finally had it installed on my work computer and I find it amazing. The majority of my job is computer based, and the programs that we use have the smallest font that even perfect sighted people struggle to read at times. I have spent so much time craning my neck and straining to read, and having ZoomText on my computer is probably the best thing I have done so far for my condition. I was finding that I was getting headaches and a sore neck, which I get no more!

I also put the software on my home computer, which I also bought a 27 inch monitor for (and it's HUGE!), and I am in heaven. I'm used to the sliding across the screen now and I can't use a computer without it.

The software has some nifty inclusions - changing colour schemes, changing the mouse so it's bigger or has a circle around it, making the cursor larger and the speech component, which I haven't had the need to use as yet, and when I have people wonder what's going on in my office when they hear a weird, computerised voice coming from it!

I highly recommend the software, it has changed my life!

As mentioned I purchased my ZoomText from Quantum in Australia and their website is below.

Quantum Reading Learning Vision

Tuesday, October 18, 2011

Updates on Advanced Cell Trials!

As I have mentioned previously, Advanced Cell Technology are undertaking in stem cell research to treat Stargardt's disease. They have now successfully treated the first Stargardt's patient with embryonic stem cells, and have recently been approved by the Data and Safety Monitoring Board to proceed to treat a further two patients with Stargardt's.

This is fantastic news and we are one step closer to hopefully having a treatment. It is also a positive sign that the trial has been cleared to continue as the patient must have responded well to the first treatment, or at least it was not harmful! I am looking forward to more information on the trial as I'm sure all of you are. Check out Advanced Cell Technology's press release below.

ACT Press Release

Thursday, October 13, 2011

Happy World Signt Day!!

Today is World Signt Day 2011 and it aims to raise awareness across the world of blindness, visual impairment and rehabilitation for the visually impaired. The day is also an advocacy event for "Vision 2020: The Right to Sight" which is a World Health Organization (WHO)and International Agency for the Prevention of Blindness initiative with the ideal goal to prevent blindness. Below is the infographic by Ultralase to promote World Sight Day and eye health.

Love Your Eyes Infographic
Infographic by Ultralase

Friday, September 23, 2011

The London Project

I have been told by several people to check out 'The London Project' as they are making strong progress in finding treatment for blindness. The organisation aims to cure blindness through stem cells, and with what I have learnt to date about Stargardt's, this seems to be the future in our treatment. Their main focus is on macular degeneration, but this could definitely lead to treatment for Stargardt's, as they are focusing on finding a way to replace the damaged RPE cells of the eye. 

The London Project has finished the safety phases of its trials and will proceed to human clinical trials in 2012, which is very exciting news. Like Advanced Cell in the US, The London Project uses embryonic stem cells and hopefully success is in the near future.

The organization is currently asking for donations to make the next phase of trials happen. Anybody wishing to donate can do so on the link below.

The London Project

Saturday, August 27, 2011

Moment of Truth

I have been putting this off for quite some time, but I thought I should get myself together and go to my optometrist to have a check up to see where my eyes are at. I also needed a new pair of glasses as the pair I currently wear are broken - I sat on them and my Dad did a botch glue job to 'fix' them and they are now wonky. So all in a all a visit to the optometrist was overdue.

I felt quite nervous because I didn't want to hear bad news. I had been feeling as though my eyes were deteriorating, that I couldn't see as well and things were getting harder. Going to the optometrist was a big deal for me. 

My lovely Mum came along with me for moral support as I am known to have a breakdown or two, and she came in with me to do the testing. I really REALLY hate doing the eyes tests. I can never see anything and I get really frustrated trying to read the letters. Without my glasses the massive two letters on the first row are a big, blurry mess. So the test stresses me out a bit as I want so badly to be able to read the lines when I can't.  My optometrist discovered that my eyes have become more shortsighted,  so he was able to give me a stronger prescription to help me see in the distance slightly sharper and clearer, which I am excited about.

The great news is my eyes have not deteriorated in the last three years since I have seen him, which I am very lucky and thankful for. The only dampener was that my eyes really are rubbish and I am almost classified as legally blind, but if this is going to be it I sure can live with this and soldier on!

We had a big talk about the reality - driving, work in the future and possible pensions. The last thing I want is to be on a disability pension. I love my work and could not think of a day not being able to work. So I will cross that bridge later when I get to it, but I think its important that I am aware of what help is out there and have an understanding so if the need arose I would know what I have to do.

The main highlight of my visit was getting new glasses! I am so excited to get them! I purchased a new set of Oroton frames that I am in love with that are slightly bigger than your normal sized frames (yes I'm following the fashion trend) and I had an old Guess pair that I'm putting frames in as well.

I am very lucky to now know that my eyes are stable and fingers crossed they stay that way. At least I don't have to go back for testing for another few years!

Thursday, August 25, 2011


My Zoom Text finally arrived today!!! I am very excited to get it to work tomorrow and load it up! I have been waiting for this software for such a long time so it is a great relief that I finally have it in my hot little hands!

I must thank Quantum for their help, they have been really helpful and so quick to respond to all my queries. Once I purchased the software they sent it straight away. 

I'll keep you all posted on how it goes when I get it into work! I can't wait to read my computer screen with ease!

Check out Quantum, I strongly recommend them for all technology you might need!


Tuesday, August 23, 2011


I really enjoy reading, especially before bed, and have a recent goal of collecting many books to make a mini library. In the past few months, I have realised that it has become harder to read books, and I can no longer put the book closer to my face as it is already touching my nose. So I stopped reading and started watching more tv.

Not long later I signed up at my local library and discovered there was a "large print" section. I was so excited I could start reading again without having to strain my eyes. I started browsing through the shelves trying to find something interesting, but everything seemed like an old, romantic novel and nothing I was interested in. All the books seemed to be targeted at an older age group. What about me?! I have poor vision too and want to read! So I was left disappointed. 

I then decided to do some googling to see if I could find anybody selling large font books. I looked up the major websites and found, once again, that almost all the books were aimed at the older generations. I was actually quite surprised I thought that at least the major novels would be printed in large font, but no.

Options to help reading would include reading on the computer where there is adaptive software to enlarge, or a screen reader, but this doesn't enable me to read in bed or lay in the sun and read. I thought possibly I could purchase an iPad and download books on there to enlarge, yet this is an expensive investment considering there are other things that I need as well. 

I hope to find a place or a shop online that sells large text font in books that I'm interested and if anybody has a secret about this please share! 

I am also seriously considering getting an iPad not only to help me read but also so I could play all my favourite games that I'm starting to struggle playing on my iPhone. 

Until then, I will be tuned in to my tv (mind you it's 60 inches and I still can't see the thing properly!!).

Saturday, July 30, 2011

Update on the Bionic Eye

I have posted previously about the bionic eye and have some exciting updates. 

A new microchip has been produced which will speed up the process toward the bionic eye, and I'm proud to say it's an Aussie organization leading the way - Bionic Vision Australia.

On the website, they also explain how the bionic eye will work:

"The high-acuity bionic eye will consist of a camera, attached to a pair of glasses which capture images and send them directly to a retinal implant, containing a microchip. The information is decoded by the microchip and informs the electrical stimulation of the retina. These signals are then passed along the optic nerve to the brain where they are interpreted as vision."

This is amazing stuff and will not only benefit Stargardt's patients but other more common eye conditions like macular degeneration. 

I've been pondering this idea of becoming bionic woman for a while, although I never really understood how it would work. I kept telling people "it's something to do with a microchip in your eye" which actually sounds quite weird. Now I understand that it will incorporate glasses, hopefully a pair that you wear every day and not big, thick lensed goofy looking glasses! I'm guessing there will still involve some sorts of surgery to implant the microchip and then to connect it to the nerves. Medicine truly is amazing.

This is a diagram from the Bionic Vision Australia website explaining how the device will work.

Check out their website for more information and to see the picture clearer!

Bionic Vision Australia

Wednesday, July 27, 2011

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?!?!

Wednesday, July 13, 2011

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!!!!

Tuesday, July 12, 2011


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!

Saturday, June 25, 2011

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.

Wednesday, June 22, 2011

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 :)

Saturday, June 18, 2011

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

Saturday, May 28, 2011

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?

Sunday, April 24, 2011

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

Tuesday, April 12, 2011

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!

Thursday, April 7, 2011

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

Saturday, March 26, 2011


I have now known I have had Stargardt's for 2 years. Sometimes I think I have accepted it, yet there are other times I still think "why me".

For instance, I was in the car tonight looking ahead of me thinking that the action going on in front of me was one big blur. I feel like my blind spot is expanding and is taking up more of my view of the world. It almost scares me a little bit as I am the type of person that likes to see, hear and know every detail of what's going on in the world around me. I suppose you could say I'm a control freak!

So this whole diagnosis of Stargardt's has impacted me enormously, and has affected the control I have had on the world. It makes me think that this has happened to me for a reason and maybe it's going to teach me a life lesson - to let go and live no matter what you are faced with.

This is easy to say yet extremely hard to do. Even though there might be days that are tough and upsetting, it's important to always look at things from a positive angle - I may not be able to see the entire detail in front of me, but I can still see that there are lights and scenery! I guess things are only as bad as you make them, and if we can all face losing our sight at such young ages, imagine the other things we can accomplish in our lives!!

Moral to the story - always stay positive even when it may seem like there is nothing positive about the situation, if you look closely enough, you will find something that lifts your spirits!!!!

Wednesday, March 23, 2011


Check out the latest clinical trail being conducted in the US and France. The research into StarGen has been going on for some time, and below are some links following the progress.

2011 StarGen

2009 StarGen

StarGen is a gene therapy developed specifically for Stargardt's. If successful, it would consist of only one treatment directly into the retina which is great news.

Gene therapy involves treatment of the actual affected cells of the body. It can remove damaged genes, alter the genes or insert genes into a particular cell, in this case in the retina. Gene therapy studies are focusing predominantly on hereditary diseases, such as Stargardt's. Some problems noted with gene therapy include immunosuppresion and problems with viruses that may be used to carry the gene.

It is seeming like a treatment is inevitable and likely to be in the near future, so it is important for us all to keep our spirits up and focus on enjoying the experiences we are going through, whether they be positive or negative!!

Check out this website also for more info:


Sunday, March 6, 2011

Update on Advance Cell Technology Progress

ACT, who were granted permission last year to conduct a human clinical trial treating Stargardt's patients with stem cells, has announced that they can procure embryonic stem cells without embryonic destruction - a positive ethical step. They state that they are also hoping to progress to the second phase of the Stargardt's specific trial in the first half of this year.

Check out the link below:

Advance Cell Technology Update

Wednesday, February 16, 2011

Bionic Woman!

I am VERY excited about this - the Bionic Eye!

A relative informed me of an interview on the Today Show on the bionic eye this week, and the progress that is being made. Check out the video below:

Medical Miracles - Today Show (Search for 'Medical Miracles' from the 14th February 2001)

It looks as though a bionic eye is on the horizon!

Also check out the Bionic Vision Australia Website:

Bionic Vision Australia

It looks like Australia is in the for front! Very exciting stuff!!

A Cure in Accutane?

One ray of hope that I was given from my opthamologist was the possibility that the drug Accutane could help treat Stargardt's. I was told that if a doctor could have a good enough reason to prescribe the drug to me, my opthamologist would study its effects on my eyes.

Accutane is a drug used to treat severe skin treatments and also cancers. It is known to have severe side effects such as birth defects, kidney problems and depression.

Overall, this drug does not sound like something that I would be willing to take, which I decided after I researched into the side effects, and would probably not be a treatment I would consider for the same reasons even if it would halt the progression of Stargardt's. Although it must be remembered that the progression of Stargardt's can not be predicted so would I risk taking the drug for a condition that may not even get seriously worse? Any thoughts?

Check out the following links for more info on Accutane:

MD Support - Accutane and Stargardt's


Wikipedia - Accutane

Friday, February 11, 2011

Help through technology!

I thought I'd share with you all my long process with accessing assistance technology for the workplace.

Since my diagnosis 18 months ago I have been in contact with Vision Australia to find assistance especially with regards to work. My work is predominantly computer based and I also have to read small text constantly, so I was struggling at work, and most my colleagues noticed I had my nose almost on the computer screen just to see my work!

I found it quite difficult to access assistance. I ended up going through Job Access Australia. To qualify, I needed to work a minimum number of hours per week. Vision Australia also came to my work to do an assessment to see what sort of equipment I needed.

My application was finally approved last week,  and I am on my way to receiving a new, larger computer screen, Zoom text software and also a hand held CCTV for my reading and paper based work! I am ecstatic to finally be getting my equipment so I can eliminate the headaches I get from sitting so close to the computer screen and my work!

The only issue I have had with Job Access is the fact that once you are approved for your equipment, you have to pay upfront and then they reimburse you for the entire amount. This can prove difficult for some people as the total often amounts to thousands of dollars.

Here are the links for both Vision Australia and Job Access. Check them out and see what other support you may be able to receive if you haven't already!

Vision Australia

Job Access

Saturday, February 5, 2011

More hope!

Another clinical trial is being conducted in Rome, Italy, directly relating to Stargardt's!! This is very exciting news! The study centres around Saffron (a spice) as it is thought to be a "retinal neuro protectant against oxidative damage" (see link below).

The study plans to give saffron supplements to participants to study its effects. This is very exciting news as it seems to be a much simpler way of treating or at least halting the disease. I am even considering going to my local health food shop and getting some supplements or maybe even eating some spicy saffron food!

Fingers crossed this trial is successful!

Check out the link below for more info.

Stargardt's Saffron Trial

Thursday, January 20, 2011

Electrodes from hell!!

Looking back on photos from last year, I came across some my mum had taken before my diagnosis during an electrophysiology study (EPS) of my eyes. This was to determine what extent my retina had been affected.

I remember this day to be long, bordering torturous, although I was extremely lucky to have the most amazing technician at Prince of Wales Hospital in Randwick, Sydney. In total, I sat in that hard stool for four hours! I had about a hundred of the yellow anaesthetic drops in my eyes along with dilating drops, and fondly enough I was a pro at putting in drops by the end!

The tests were definitely testing my patience; each eye I had tests repeated with different types of electrodes, in the light and in the darkness. I was definitely sick of staring at the same spot for hours on end.

The electrodes were placed on my forehead, ear lobe and in my eye. I looked like a freak! Yet my mum insisted on taking some happy snaps! One electrode was like a very thick contact, with cords coming out of it, and the other was a thin sheet of gold that hooked into the eye. Yes, hooked sounds horrible but it literally did, and I guarantee you I did not feel a thing and remained totally calm thanks to the amazing technician!

Apparently I need to repeat this test every three years. I'm definitely not looking forward to it again!

Anyone else had this experience?

Saturday, January 15, 2011


Advanced Cell Technology (ACT), who late last year were granted FDA approval to conduct clinical trials for embryonic stem cell treatments for Stargardt's patients, has now also been given approval to use embryonic stem cells to treat patients with Dry Age Related Macular Degeneration (AMD).. It seems to be a very similar trial, using the same cells to produce new RPE cells for the macular, and it is also in the first phase of safety trials. This trial could also be important for us Stargardt's patients as the conditions are similar. Check out the ACT website:

ACT - Approval for Trials of ESC's for AMD

Sunday, January 9, 2011

Goggle Vision

As we welcome a new year, we all hope that 2011 will bring a breakthrough for Stargardt's patients! Finger's are crossed!

I have been doing a social experiment over the last couple of months. My mum brought home from work goggles from Vision Australia that a person can put on to see what it looks like to have different eye conditions. Specifically interesting to us were the macular degeneration goggles. Igot friends and family to try on these glasses to see how they react to seeing through the eyes of a person with a macular problem, such as Stargardt's. Their responses were quite interesting:

"I'm never getting in a car with you again!"

"I can't see anything!!"

"There's a big white blob in the middle?! Is that right?"

Everybody was shocked. My eyes are not currently at this stage, but it was interesting to see how people reacted to having their vision impaired. It helped those around me to understand what I see and what I may be experiencing.

In response to my friend who remarked about my driving, I had to remind her I wear glasses for that reason and my eyes are not at that stage at this time! Yet other's can get the gist of what I mean when I say "I just can't see what's in the centre unless I look around it."

I feel that these goggles have been a useful tool and are great for helping others to understand my situation. It would be helpful if they were more widely available so our friends and family could understand our struggles even better!

Has anybody else had any similar experiences?