News, Links and Commentary
Saturday, September 27, 2003
World Retina Day
Every year World Retina Day falls on the Australian Football League's Grand Final. Today the Brisbane Lions beat Collingwood (yay!) to win their third premiership in a row and my retinas feel all the better for it. The Western Australian RP Foundation was mentioned in a feature in Wednesday's West and my Tassie sister reports that community service promotions about RP have screened on Tasmanian television. Retina Australia is also selling owl badges nationwide to raise funds for research. Wherever you are, I hope you find some small way to mark World Retina Day - whether you tell just one other person about retinal dystrophy, raise a little money, offer support, or simply make sure you look after yourself and have a great day!
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Nick W's RP Resource and Eye Sight News
Nick W has authored two useful resources - the first a site specifically for people with RP, called RetinitisPigmentosa.com, and now a forum for people with various eye condtions, EyeSightNews.
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Friday, September 26, 2003
School For Perfect Sight
Oh, I wish! Recently received an e-mail from a visitor to my site, who let me know about yoga exercises that may help vision. The writer referenced a book called 'The Yoga of Perfect Sight' by Dr. R.S. Agarwalby of the School for Perfect Eye Sight in Pondicherry, India. From looking at the site, it appears that the exercises recommended are to alleviate eye strain and to prevent eye problems that can be corrected using lenses. RP cannot be treated with lenses but people with RP do sometimes experience eye strain (from constantly scanning their surroundings, for example). At least one of the exercises was near impossible for me because it involved throwing and catching a ball. Palming is another exercise listed, and I have heard people say it helps with eye strain and flashing lights. So there you go.
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Friday, September 19, 2003
Hand Guide
Hand Guide, a product by Guideline, is a device that uses infra-red technology to detect obstacles. The Hand Guide is designed to fit into the palm of a hand and can be used as an additional mobility aid rather than as a replacement or alternative to a white cane or a dog guide. While the Hand Guide can detect overhanging branches, it is unable to detect glass walls, holes or steps - everything that someone with RP who does not yet use a mobility aid might find difficult to see during the day. With one hand holding a white cane and the other carrying a Hand Guide, you wouldn't want to need a litre of milk on the way home. Lucky I have a backpack, even if I do sometimes look like a thirty something school kid.
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Thursday, September 18, 2003
Goggles for Dry Eyes
A friend who experiences dry eyes recently recommended CliC Goggles, a company that make sports goggles with magnetic clasps, and Panoptx, a company specialising in windless eyewear that prevent dryness. My friend says the goggles are stylish and help with the discomfort of dry eyes as well as protecting her eyes from glare and the sun. I've now added a link to the company in the Night Vision Equipment, Sunglasses and Blue Blockers section of my site.
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Research News From Foundation Fighting Blindness
The Foundation Fighting Blindness, a US organisation raising funds for research into retinal degeneration, recently announced that 'First Drug Therapy for RP to Enter Human Safety Studies.' More research news can be found at the Foundation's web site, including research into future treatments for Stargardt's Disease involving a drug currently used to treat severe acne.
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RP Support in Los Angeles, California
The Greater Los Angeles RP Support Group recently formed and is now inviting people to become members. The group also has a Yahoo! Group called LARPGroup to inform members of meeting times and local events of interest, as well as to allow new members to make contact.
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Tuesday, September 09, 2003
Supplementary
Foods, herbs and dietary supplements that may help to prevent or slow vision loss are often discussed amongst people with retinal degeneration. An e-mail discussion list called RP and Nutrition was started in response to discussions of nutrition on another RD-related list, the RPList.
Recently I received a request to add a reciprocal link to a site called Vision-Nutrition.com, which sells supplements that may help prevent macular degeneration. At their site I discovered that they do not deliver outside of the US, which makes the site irrelevant to people outside of the US, including Australians such as myself. For this reason, and because I am reluctant to link to companies selling health products that I'm unable to personally recommend, I won't create a permanent link to the site.
The RetGen weblog is partly hoped to be a place to mention all of the sites and articles which I am not able or willing to link to permanently on my site but which may be of some interest. From the serious but time-specific stories to the out-of-this-world treatments and the fun facts - I'm sure you'll find it here!
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Recently I received a request to add a reciprocal link to a site called Vision-Nutrition.com, which sells supplements that may help prevent macular degeneration. At their site I discovered that they do not deliver outside of the US, which makes the site irrelevant to people outside of the US, including Australians such as myself. For this reason, and because I am reluctant to link to companies selling health products that I'm unable to personally recommend, I won't create a permanent link to the site.
The RetGen weblog is partly hoped to be a place to mention all of the sites and articles which I am not able or willing to link to permanently on my site but which may be of some interest. From the serious but time-specific stories to the out-of-this-world treatments and the fun facts - I'm sure you'll find it here!
International White Cane Safety Day - October 15
Lions clubs in Queensland are celebrating International White Cane Safety Day this October 15 with a dinner at the Chermside Bowling Club. Dinner includes entertainment and door prizes, as well as the presentation of the L.J. Saunders White Cane User award. Lions club members are able to transport guests who have vision impairments if arrangements are made on booking. Contact details and ticket prices can be read on the Queensland Blind Association's What's News page.
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Monday, September 08, 2003
Genaera's Squalamine Shows Promise as a Treatment for Wet AMD
'Genaera Reports Squalamine Improves Vision in Age-Related Macular Degeneration' (August 4, 2003, PRNewswire). This press release from Genaera announces that the drug squalamine was found to improve the vision of patients with the wet form of age-related macular degeneration.
The release states that squalamine was administered "for the treatment of choroidal neovascularization associated with age-related macular degeneration (AMD), also known as “wet” AMD." I haven't read about the two forms of AMD for some time and so double checked that there are both wet and dry forms can be age related. What Causes Macular Degeneration? (from the Schepens Eye Research Institute's Macular Degeneration Fact Sheet) clarified this for me. Although the dry form is more common, the wet form is more likely to cause legal blindness.
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The release states that squalamine was administered "for the treatment of choroidal neovascularization associated with age-related macular degeneration (AMD), also known as “wet” AMD." I haven't read about the two forms of AMD for some time and so double checked that there are both wet and dry forms can be age related. What Causes Macular Degeneration? (from the Schepens Eye Research Institute's Macular Degeneration Fact Sheet) clarified this for me. Although the dry form is more common, the wet form is more likely to cause legal blindness.
