Tuesday, 31 July 2012

Triumphant without sight! The inspiring story of Bhakti Ghatole

Little Bhakti is the epitome of an achiever, the role model for all youngsters.  Despite her visual challenge, she adapted and adopted various life skills and tools to deal with her loss.  Three cheers to the topper in the Secondary School Certificate (SSC) 10th Class Examination 2012 in Maharashtra! Bhakti attributes her success to the mountain of strength - her mother Sushma Ghatole, who ensured she learnt to read and write in Braille and use JAWS software - the two languages that the blind swear by. Sushma recorded her text books in Abrar mobile audio software in Marati and Hindi, accompanied her every evening to three tuitions in Sanskrit, Mathematics and English, and saw her through 26 chemotherapies, laser and cryotherapy treatments and two radiation therapy treatments. This is not an easy commitment and only a mother can execute all these tasks without a sigh or complaint.

Bhakti was diagnosed with retinoblastoma as a six month old baby. Her left eye had to be immediately removed to save her life. Retinoblastoma is an eye cancer that afflicts children below three years of age, at an age when the retina is still not fully developed. The doctors had told the parents that after age five, she need not return for follow up as she would be safe with a mature retina and a fully grown eye. And yet, most unfortunately, tragedy struck a second time, when Bhakti was nine years old – it was rare for the retinoblastoma to return at that age.

Bhakti was being treated at a hospital in Chennai and her doctors advised that her eye must be removed. Her father was too shocked to bear the predicament and refused to have Bhakti’s second eye removed. Two years passed before they heard that L V Prasad Eye Institute was offering a new treatment called Brachytherapy. Though Bhakti was found unfit for that particular treatment, she did have to undergo six cycles of chemotherapy to save her life. And yet again it was her mother’s initiative that ensured the correct steps were taken – when Bhakti’s father refused to face the trauma of having the second eye removed, it was her mother who brought Bhakti to LVPEI accompanied by her maternal grandfather.

These were trying moments not just for the family but more so for the young child.  At an age when she should be carefree, enjoying the pleasures of life, she was put to test.  A lot of negative emotions could have filled her mind, but this strong young girl willingly underwent eye surgery to have her second eye removed. From here on Bhakti had to consciously strive to hold her head high. She decided to learn yoga and pranayama to boost her spirits and help her concentrate better on her studies. Cheerfully conversing, attentively listening, narrating the long list of names of people who helped her clear her examinations in flying colours, this IAS-aspirant is a charmer all the way. In her avatar as a cheery and positive young person, Bhakti is a survivor in the truest sense.  

Bhakti Ghatole was diagnosed with Retinoblastoma (eye cancer) when she was a six months old baby. She has survived cancer, lost sight in both eyes and was a topper in class 10 exams. A true winner!

Bhakti with her mother, Sushma Ghatole, her pillar of strength.

Tuesday, 10 July 2012

An Eye to Success: Back on the road to mainstream living

The Story of Vijayadurga

Vijayadurga, a mother of two and a school teacher by profession, led a very active life at one point, catering to the needs of her husband and daughter - making breakfast, packing lunch, getting her daughter ready for school and then carrying on with the remaining household chores.  Vijayadurga started having trouble with her vision at the age of twenty-six and gradually started losing her vision due to an eye condition “Retinitis Pigmentosa” and had to quit her teaching profession   as she was not able to manage them any more. For a person who is used to being very active this sudden change in daily schedule due to vision problem was depressing.  Vijayadurga’s husband, a software engineer brought her to the tertiary Centre in Hyderabad.  Here, at the centre after preliminary investigations, doctors confirmed the diagnosis that neither spectacles nor intensive treatment, nor surgery could reverse symptoms. Her visual acuity was worse than 20/600, which means Vijayadurga had severe visual impairment and the residual vision is useful only for functional mobility during day light.  She cannot rely on print anymore.  The good news was that she was counseled by the rehabilitation counselors and was given a new hope to enhance her quality of life through rehabilitation intervention.  The rehabilitation centre offered her various skills training and supportive services for independent living and Vijayadurga has been using all of them for the last 6 years.

This is the advantage of having rehabilitation services within the hospital itself. The patient is able to get immediate psychological support through counseling and able to access the various rehabilitation skills training   without wasting their time or having to travel elsewhere.  Hence, rehabilitation services should be part of every eye hospital where patients with low vision or blindness seek care. However, LVPEI had built these services in its mission statement right from its inception about 25 years ago.

Setting a patient back on the road to mainstream living is a sustained task that requires patience, fortitude and unending optimism.  The first step is direct interaction which starts with assessment of vision, then identifying the needs of the person and prioritizing them. This is important because these needs vary for different people. 

Over the last 25 years, LVPEI has successfully rehabilitated over one lakh visually impaired clients with low vision and blindness across all age groups and strata of the society.  Vijayadurga was one of the many who were fortunate to be treated at this centre, which is the first of its kind in the country to offer comprehensive rehabilitation services within an eye hospital. It is also the first to make available state- of- the- art low vision devices and training programs combined with specially trained professionals. After the initial counseling sessions with the team, Vijayadurga’s family decided to go in for training in mobility, home management skills, money identification & management, computer skills, Braille skills and Daily Living Skills and also benefitted from our digital audio books services.  She is a regular participant of all workshops organized at the centre on advocacy, communication skills, personality development etc. We made home visits and assisted her in redesigning her kitchen for safe use. Vijayadurga never dreamt of leading a close to normal life when she started facing blurred vision problem.  Today, she helps her children with their studies by taking lessons orally and manages all household chores independently. She is actively looking out to secure a job and get back to normal routine.

Low vision is 4 times more common than blindness, a majority of the visually impaired have remaining vision that can be put to maximum use.  Setting a patient back on the road to mainstream living is a sustained task that requires patience, fortitude and unending optimism.  The first step is direct interaction which starts with assessment of vision, then identifying the needs of the person and prioritizing them. This is important because these needs vary for different people.  Together, the 2 Vision Rehabilitation Centres at L V Prasad Eye Institute -  the Meera and L B Deshpande Centre for Sight Enhancement and Dr. P R K Prasad Centre for Rehabilitation of the Blind and Visually Impaired provide comprehensive low vision rehabilitation services.  The training is available not only to patients who visit the Centre but also to those with low vision and blindness in the community who cannot access the services through community-based rehabilitation services. Keeping LVPEI’s philosophy in mind, we extend the rehabilitation services to the community, coordinating with the local people and pooling in local resources. From our experience, local community plays a big part in the smooth delivery of our services.  

Given that LVPEI has a physical presence in 107 locations across AP and that people in rural areas tend to have a higher prevalence of low vision and blindness, we aim to expand the low vision rehabilitation services across the LVPEI network so as to be able to cover the remotest regions of the state. By providing these services we intend to impact the lives of all those with low vision and blindness by improving their quality of life.