A long time ago….
I remember visiting my mother’s sister every now and then. She didn’t live very far away. The loving relationship that the two sister’s shared ensured that we kids were also made to spend time with her. “Masi” as we fondly called her was an extremely delightful person with an amazing zest for life.
My childhood has shrunken into vague and distant memories of most events, but there are a few things I remember, vividly. My maternal grandfathers demise after suffering from a fatal MI (heart attack) on my 5th birthday, for one and the memory of my ‘Masi’ sitting on a wheelchair unable to move around as much as she would’ve liked, unable to speak as much as she would’ve liked and unable to carry out her day to day activities.
Mum always told us that ‘Masi’ was suffering from a “ALS”, a medical condition that was going to debilitate her. Not much of what mum said stuck in my head at that age, but these three words did- ALS. That was probably the beginning of a developing interest in the human body and its trials and tribulations.
I’d seen ‘Masi’ wheel chair bound for a long time. Towards the end, she was unable to communicate. I can’t remember the exact sequence of events that led to her passing away, but I do remember my mother being inconsolable for days together. Losing your near and dear ones is always disheartening. I was too young to understand the concept of life and death and was shielded, by my parents, from seeing my Masi after her demise.
A few years ago…
I was studying for the under-graduate course in Medicine. As a part of the curriculum, medical students were posted in wards to undergo clinical training for the challenges that lay ahead.
During the General Medicine postings, we came across a patient, Mr. Arnab, a 38 year old male banker, a teetotaller, non smoker, who presented with progressively worsening dysphagia (difficulty in swallowing). He also complained of slurring of speech since the past few months. Suspecting a neurological disease, probably a Cerebro-Vascular accident (CVA, stroke), a CT scan was arranged for the patient. The report turned out to be normal. The patient improved with symptomatic treatment and was discharged.
However, 2 weeks hence, the patient returned with similar symptoms. Not wanting to take a risk, the consultant referred the patient to a honorary Neurologist at the same hospital. An MRI was performed for the patient. It clinched the diagnosis. Correlating the clinical features with the MRI findings, the patient was diagnosed with ALS.
Facing abandonment from his family and friends, who were unwilling to bear the expenses for the treatment, the patient jumped from his residential building and committed suicide.
Amyotrophic Lateral Sclerosis… Very rarely do diseases have names as self-explanatory as this one.
Amyotrophy literally translates into atrophy (decreased bulk) of the muscles, a consequence of the death of the nerves. Sclerosis (hardening) of the lateral tract i.e the cortico spinal tract (more commonly referred to as Motor Neurons), the part of the spinal cord that carries nerve fibres from the motor area of the brain to the various muscles in the body. When the brain perceives the need to move a particular part of the body, the nerves in the motor area of the brain fire an impulse. This impulse travels down the lateral tract to the body to cause contraction of a particular muscle.
Death of the nerves leads to a hardening of the tract and in turn a decrease in the muscle bulk. The nerves which fire the muscles to work, have stopped functioning and so also will the muscle. The individual suffering from this disease will eventually become a cripple, wheel chair bound, unable to carry out activities of daily living.
The exact reason why this disease occurs isn’t known. As a consequence of the rarity of this disease, research work on this subject doesn’t garner the same level of funding as other more prevalent diseases. The only effective drug used against this ghastly condition is Riluzole, a drug that reduces the free radical (toxic chemical) formation in the motor neurons and is partially effective in delaying the symptoms of the disease. However, there isn’t any proven benefit of the drug.
How expensive could such a drug be? 1200$ for a month’s supply. Lack of funding for research and the low profit margins for the pharma companies, due to the rare nature of the disease, being the sole reasons for the unaffordable costs. So expensive is the drug, that most patients who suffer from the disease prefer to die due to the disease, rather than burden their family with debts.
Apart from the cost of the medicine, nursing care at home is also an expensive affair. Manpower, equipment and 24 hour monitors are required for the safe care of such patents at home. No one dies as a direct result of the disease. Complications like bed-sores, pneumonia, pulmonary embolism (clot in the lung vessels), heart attack are very common in patients with ALS.
Hordes of peoples are questioning the motives of the #IceBucketChallenge #StrikeOutALS
Why the ice-bucket challenge for a disease such as ALS? Why not use it to create awareness for malnutrition, poverty, maternal and child health etc..? After all, ALS is a disease of the first world countries. We as a third world country must fight the other social ills.
Poverty, malnutrition, malaria, maternal and child health are some of the biggest unsolved health problems in this country. However, to propose an ice bucket challenge or something on the same lines, for the aforesaid diseases, is utter folly. The awareness created, not only by the government, but also by the WHO around these issues is phenomenal. I haven’t seen a single home delivery in my year as an intern at Navi Mumbai Municipal Corporation Hospital, a hospital that arguably caters to the underprivileged population. Citizens are being educated and awareness levels are rising.
With ALS, no amount of awareness created is enough. No one cares about a disease which affects two in a lac. No one who hasn’t suffered from it himself, or has seen someone suffer from it. I have seen my own relative suffer from it and have supervised the treatment of a patient who suffered from the disease. Its a death sentence with no date.
If funding and research can retard its course, let alone cure it, why not! Aren’t the 2 people, amongst a lac, who suffer from it human beings? Aren’t those afflicted by it, from third world countries?
The ice bucket challenge is a great initiative.
As for the questions raised by people about wasting clean water.. How many of those who question others motives, bathe under the shower everyday, wasting precious drops of water. Take the ice bucket challenge, use clean water to pour over yourself and avoid bathing on that same day. PRONTO!! Water conserved. Optimism is a great thing. The world isn’t such a bad place after all!
This helps spreads awareness about a disease that not many people (including doctors) know about. It’ll probably reach out to a philanthropist, willing to donate, in a corner of the world, where knowledge of this condition is not commonplace. Funds will be garnered in this manner, research will be strengthened and who knows, with the advances in medicine and technology, a cure may be found. Lets #StrikeOutALS, cause the ones who suffer from it, deserve more!