http://www.hindu.com/mp/2010/07/29/stories/2010072951010200.htm
Holding on to hope Retinitis pigmentosa robs countless people of their eyesight. But here's an organisation that provides a supportive network, says HEMA VIJAY SILVER LINING Theirs need not be a dark world As a 14-year-old, L. Subramani was a boisterous teenager with a million ambitions and a life full of colour. It was then that retinitis pigmentosa (RP) struck and took away his eyesight, throwing his life into disarray. But, slowly, Subramani learnt to manoeuvre his way through the world, and to even read and write using a computer. Today, he is a successful journalist. "I was lucky because I had a supportive family and network of friends. I had access to computers and could overcome my inability to handle pen and paper," he says. While Subramani was able to cope with his problem, scores of other children with retinal disorders are forced to remain dependent on others and they get depressed when faced with bleak career prospects. But, there's a ray of light and hope with organisations such as Retina India which provides a supportive network for those with retinal disorders, as well as their family and friends. It connects them not just to physicians and researchers but also to counsellors, low-vision and mobility experts, career counsellors and other specialists. Founded by Dr. Rajat N Agrawal, with himself, L. Subramani, Dr. Arvind Bhartiya, Prasad Gurav and G. Kumarmanickavel as founder trustees, Retina India has specific e-groups for parents, youth and the like, which enable them to share experiences, exchange information, forge friendships and bust depression. "At present, the focus of most organisations is on cataract and corneal problems. We now need to direct our attention to retinal disorders, as these actually affect scores of people," says Dr. Agrawal. Some forms of blindness go uncured because of lack of facilities and awareness. "Gene therapy has been found effective in curing LCA-induced blindness, while a bionic eye can help people with RP see again. Retina India is working on bringing these therapies to India," says Dr. Agrawal. Answering questions When a child gets diagnosed with a retinal disorder, besides the trauma, there is confusion. There are a million doubts and unanswered questions. What can the child do now? What are his career options? Where can he learn mobility? How to find a retina specialist in his locality? What are the latest and best treatments available? Where to access low-vision aids? How to handle the depression? How to modify the house environment to facilitate independent access for his daily needs? Are there sports options? What about marriage? Ophthalmologists may not have all the answers. "Retina India could guide you to organisations and resource centres which offer such support and services," says Uma Keshav Rao, member, Retina India, and mother of a child with a retinal disorder. For instance, the Resource Centre for the Visually Impaired at Loyola College offers special computer courses for the visually-challenged, and even provides extra support. "Today, most subjects such as mathematics, accounts, and entrepreneurship, which were previously considered out of bounds for visually-challenged kids, are now very much within their reach," says Uma. That is how visually-challenged Rajesh Parakh (incidentally a member of Retina India) became a successful entrepreneur and Arvind Bhartiya a sought-after chartered accountant. "If you wish to follow a specific career, we can connect you to someone in Retina India or to local organisations that can help you," says Dr. Agrawal, consultant ophthalmologist and vitreo-retinal surgeon, director of the Hereditary Retinal Degeneration Center, and study director of the artificial retinal implant project at the University of Southern California. Committed volunteers have been driving Retina India forward, but so much work still lies ahead. Retina India invites people with a desire to do something good to volunteer their time, money or expertise and be part of the movement. "Even if you just want to work on a project, or if you want to be a reader or mentor for a visually-challenged individual, we will help you connect to someone living in your area," says Dr. Agrawal. Retina India can be accessed at [email protected] for general information or [email protected] for medical information. Or call 95510 90749/ 95439 94910 / 32975622. One in 800-1000 persons in India has retinitis pigmentosa. Other retinal disorders such as macular degeneration (seen more commonly in elderly people) affect eyesight. Around 10 per cent of diabetics have or will eventually develop diabetic retinopathy. There are about 100 million diabetics in India. Around 12,000 born-blind Indians are suspected to have Leber's Congenital Amaurosis (LCA). FACT FILE One in 800-1000 persons in India has retinitis pigmentosa. Other retinal disorders such as macular degeneration (seen more commonly in elderly people) affect eyesight. Around 10 per cent of diabetics have or will eventually develop diabetic retinopathy. There are about 100 million diabetics in India. Around 12,000 born-blind Indians are suspected to have Leber's Congenital Amaurosis (LCA). Regards, Vamshi G M: +91 9949349497 R: +91 877 2243861 Skype: gvamshi81 www.retinaindia.org >From darkness unto light Voice your thoughts in the blog to discuss the Rights of persons with disability bill at: http://www.accessindia.org.in/harish/blog.htm To unsubscribe send a message to [email protected] with the subject unsubscribe. To change your subscription to digest mode or make any other changes, please visit the list home page at http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in
