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!!
Wednesday, February 16, 2011
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
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
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
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!
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
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?
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
FYI
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
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?
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?
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