I have previously posted about the Australian Inherited Retinal Diseases Register based in Sir Charles Gardiner Hospital in WA. I plead with anybody who hasn't yet registered to give them a call so that we can get a better idea of how many Aussies are affected.
I spoke to the Research Assistant, Ling, who kindly gave me the statistics they have collected so far. Currently there are 147 registered as being affected by Stargardts. Considering we have around 22 million people in the country, that is 0.000735% of the population (if my maths is correct). So let's spread the word and see if we can get all the Stargardt's people to register!
You can also donate your DNA to their DNA bank for future research. I have also convinced my mum, dad and siblings to give blood too (after I told my sister it was a needle in her rear end and she believed me!), so that in the future researchers can analyse the genetics of the disease.
For more information check out the website below or contact Ling Hoffman (08) 9346 2449.
IRD Register
Hi there C.R,
ReplyDeleteI've just spent quite some time reading through your posts. My 10 year old daughter (little sweetie in my photo) was told last week that she has Stargardt's. She was very brave and was more upset about the blood test they wanted to take (she was too scared to have it done). We'd been struggling for some time with her glasses never seeming to quite do the job properly and the last set she got she called her rubbish glasses and she was also struggling to see some lighter shades of pencil lines. We were referred to a specialist who saw some flecks/spots on her retinas. After that she did tell me that she had what she called a 'firework' or 'fuzzy spot' in the middle of her vision and that it had been there for ages and she thought it was because she'd been staring at the lights in class for too long. She struggles to see the board in class now and has to sit closer to the TV. We've just bought her an ipod touch and she manages using this really well at the moment and can still read tiny print. Your post about the ipad was helpful as we had thought about one of those once she starts to struggle with her ipod touch. It's the school holidays here at the moment and today she went to a basketball club 10am - 4pm. She did really well but once we'd left she said that her eyes ached and were quite bloodshot. I didn't know that could happen, but I suppose her eyes have to work so much harder to see things that they were just very tired. We are so worried about how she will cope and how bad her eyesight will get and how quickly it will deteriorate. She wears sunglasses now when the sun's out and we've ordered her some clear lenses with 100% UV protection for cloudly days in the hope that this will help protect her eyes. Been going a bit crazy with the whole what foods to have and what foods to avoid. We saw a second specialist (Professor Moore) at Moorfields Hospital in London (who told us it was Stargardt's) last week. He said she should wear sunglasses on really sunny days, have a diet with plenty of fruit and veg and that we shouldn't give her any supplements. She's booked in for her electrodiagnostic test next month and she's already worrying about that as a 'friend' at school told her it hurts. I read your post about a similar kind of test you had and it does seem unpleasant. I hope she doesn't freak out as much as she did with the blood test. I'm trying not to think too far in the future for her. I'll be checking in regularly to read your posts. Bye.
I love how she calls them her "rubbish glasses"!!!! Prof Moore is a world renown doctor on Stargardt's so you are definitely seeing the best doctor. There's so many things that can help her with her schooling she just needs to find what she likes and can use. Thanks for writing and I'll do my best to find more information about stargardt's!
ReplyDelete