Positivity

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!!!!

StarGen!!

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:

StarGen

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

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

Accutane

Wikipedia - Accutane

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

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