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There isn’t anything more painful for patients and their caregivers than the days and weeks that follow the diagnosis of a condition like Retinitis Pigmentosa. In a country like India, where awareness about different kinds of ailments among the people still needs desirable improvement, the seriousness of the disease isn’t realised until the eyesight actually starts to decline.

Patients’ experiences suggest that diagnosis of R.P. need not necessarily coincide with the deterioration process. The gap between detection and deterioration can be weeks, months or possibly even years. And, as doctors assert, deterioration isn’t always complete and patients can expect to retain some vision, but even they won’t be certain as to how much of vision the patient would retain, for how long, or, if total blindness could complicate healthcare issues during old age?

Such issues make care giving more challenging for close families and loved ones. For instance, if the deterioration is rapid, it would take a while for the patient to feel the impact of it and the immediate family is completely in the dark about it. If the patient is a child or someone who is reticent, then it would be harder for the patient even to verbalise how much they could see and how clearly? Even for someone who isn’t reticent, the sheer confusion or inability to immediately grasp the drop in visual acuity could create problems in accommodating themselves to the fast changing situation. In short, whatever the patient could see a week or two ago could disappear behind the haze and blur without the patient understanding it clearly.

A college-going teenager diagnosed with R.P. at the age of six, experienced nearly 40 per cent drop in vision about six months ago. “The days here were cloudy and grey and I thought my sight was dim because of that,” she said, asked whether she could feel the deterioration. When the doctor confirmed that she had actually lost significant vision in her eyes, the girl broke down right on the doctor’s couch. The family too had no clue about it until the doctor found out.

This is perhaps why patients must constantly check their eyes. Families too must be alert and observant about any hesitation, display of fear while walking or difficulties in spotting objects.

Despite the challenges, families have a crucial role to play in understanding the condition as much as the doctors or patients themselves. At a time when children are under pressure to excel in studies, in sports or music, parents put them through a treadmill, quite literally in some cases, without worrying about the child’s physical wellbeing. Many of them interpret the child’s inability to see the blackboard as a prank, an excuse to escape the drill. When the child wonders why she is unable to see the math problem the teacher had written on the blackboard, telling her that she isn’t sincere in doing her work or she is playful will only multiply the pain and frustration.

Success in many cases comes as a result of someone loving us and instilling the belief in us that we would live our dreams. Rather than drill sergeants, militarist work masters and those barking instructions on our faces, we need people who stand behind us all the time and squeeze our hands discretely just to inform us that they are there.

People with R.P., as much as the able-bodied persons, need loving presence of their families who are proud of them the way they are. Such loving persons alone could inspire us to succeed and add meaning to our accomplishments.

**Our friend Mr. Prasanna Shirol has established Organisation for Rare Diseases India (ORDI) with a group of friends and likeminded people both to create common platform for patients/families who deal with very uncommon diseases and also to represent the patients at the government level. ORDI would help us aggregate the focus and attention to bring treatment and diagnostics and make them affordable. Prasanna is also working hard to build patient-led initiatives and disease specific networks. Patients who had fallen through the ever-widening cracks in our health system, merely because our pain and suffering is caused by an ailment that is rarely understood, need such initiatives where we can ensure people act in our best interests and we could personally work to help each other. Please visit:

http://www.ordindia.org

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