[AI] Holding on to hope, an article from The Hindu

Vamshi G gvamshiai at gmail.com
Fri Jul 30 08:45:36 EDT 2010


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 info at retinaindia.org for general information
or retinaindia at gmail.com 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

 

 

 




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