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