On the rocks

 A few years ago, the Ice Bucket Challenge had become popular. Everyone from film stars to sports legends were posting videos of them getting drenched in icy waters to jump on to the viral trend. But I wonder how many people knew its real purpose. The challenge was meant to create awareness about ALS and to expedite the research for a cure . Like all things viral, the trend has long died. And unfortunately so have many people from this sadistic disease.

ALS has been known to mankind now for almost a century, but we are yet to make the breakthrough. All we have is one approved medicine - Riluzole, sold under the name Rilutor in India. The medicine claims to prolong survival by 2 to 3 months. 3 months? Really? Even a season of Indian Idol lasts longer than that. This means I would die before knowing who won the season. LOL.

I can't help but wonder what is taking so long. None of the neurologists I met seemed disturbed that they were faced with a problem that they could not solve. They seemed to lack curiosity, as if they had accepted that this was an unsolvable problem. Their nonchalant approach boiled my blood. After my diagnosis I have been pretty much left to figure things on my own.  

I don't know if the problem is the doctors or the pharma companies. A senior neurologist confirmed to me that there is no clinical trial happening right now in India for ALS. Not that other countries have succeeded, but at least they are trying. It is so important that we do it too, otherwise it will be like the SMA injection, which costs over Rs. 15 crores to import. 

The problem is not limited to the cure. We also lack exact diagnostic techniques. At present ALS is diagnosed by method of elimination. This means I had to be tested for every other condition under the sun whose symptoms were remotely similar to ALS. For a year I had to have my blood drawn so many times that my arms looked like those of a drug addict. On a lighter note, I earned so many customer loyalty points with my diagnostic lab that I got a couple of tests for free. 

It is ironic that we know more about the soil composition on the south pole of the moon than we do about the human brain. Currently the situation is on the rocks, so we must act now. The truth about ALS is, several patients and their families are desperately waiting for a cure. 

Comments

  1. Belly Laugh DailyAugust 26, 2024 at 11:58 AM

    Sending strength, gratitude & warm regards from the US. Thank you for your blog -- I really appreciate your insights on living with ALS.
    A close friend was just diagnosed and I'm reading as much as I can to learn how I might be helpful to him & his kids now and in the future.
    And yes, I am telling everyone who will listen about the need for more dollars and more advocacy around ALS research.
    Thanks again and I wish you peace, love & (if possible) laughter.

    ReplyDelete

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