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