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?
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
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?
