Denial

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!

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

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

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

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

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.

Infographic by Ultralase