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“R.P. is a progressive degenerative retinal disease with no cure or treatment. Then why should I go to my ophthalmologist regularly?”

The question from a patient in the audience almost stunned the doctor who gave a presentation on newly emerging treatments at a gathering in Bangalore.

Most of the patients and their care givers/family think going to doctor is all about cure or treatment. Though that could be true about any other medical situation, it will not be applicable when it comes to dealing with R.P.

More than the doctor needing us, we need the doctor. Why? There are many reasons, but let me mention the important among them.

-Being a progressive condition, R.P. needs medical monitoring.

Going to a doctor periodically to check whether there is loss of vision may sound like enduring the painful truth we all would like to escape, but we need that information not only to understand the extent of our vision but also to learn if the progression is gradual, fast or halted. While some of us may avoid the doctor specifically to shut out the bad news, we could actually be shutting out the good news, which would be that your vision has not degenerated.

Let me not get into the typical medical details, which I’m sure your ophthalmologist would provide, but as much as I can tell you, R.P. and other retinal degenerations are a-typical in the way they manifest in each patient since the genes could react differently in different patients.

This means you can’t judge how soon or late the condition would affect you. For instance, two of those who have gotten in touch with me are experience severe vision loss in their late 40s, while loss of vision in my case and that of one of my brothers was almost a freefall from the time of the diagnosis to the on-set and deterioration to the point of vision impairment.

I also had to recently deal with an 18-year-old patient who was diagnosed of R.P. aged six, but always thought she had reasonable vision. About six months ago, the doctor told her that she had lost nearly 40 per cent of her sight suddenly, which made her break down on the doctor’s couch.

There was one patient who experienced total vision loss in his sixties.

All these cases, viewed from the context of what we frequently hear from the doctors, suggest it is vital to understand how the disease affect each individual.

-One of the most neglected aspects of dealing with R.P. and other conditions in India is the inability of many patients to tailor their rehabilitation to the diminishing vision.

It is absolutely important that we take our rehabilitation seriously. But as much as we have seen, progressive vision loss takes a tremendous emotional toll on patients and their families. Adjusting to the rapidly failing vision often adds to the trauma. So it takes unusually long time to reconcile with what has happened and seek help.

Lack of immediate help such as mobility and orientation, information on jobs and education, proper counseling and mentorship (especially for the younger patients) and support for the families and caregivers also severely impact patient’s recovery from progressive vision loss.

Despite availability of technology, the ubiquitous social media and vastly improved expertise and rehabilitation centres, it is often hard to connect the services with the patients.

Everything, of course, begins with the first and the most important step of understanding how the condition affects our retina and, by extension, the way we function in our physical environment. For this reason alone, patients must stay in touch with their doctors.

Even if some breakthrough research were to happen soon, they need doctors to tell them if they are physically ready to subject themselves to treatments.

**I am introducing my book “Lights Out” to audiences in Chennai. Following through with my commitment, I have made members of APRED to organize a panel discussion among R.P. patients around some of the issues I have dealt with in the book to create a common understanding among the patient community. It would take place at the Rajan Eye Care auditorium, Tirumalai Pillai Road, Chennai on Saturday June 14, 2014. For more details, please write to anandhi.viswanathan@gmail.com.