Hello People, I’m Rachit Shah, diagnosed in 2016 with Isaac Syndrome (a diverse disorder as a result of muscular hyperactivity), Membranous Glomerulonephritis (a slowly progressive disease of the kidney), Lymes (a bacterial infection that can be spread to humans by infected ticks) and Glaucoma (an eye conditions that damage the optic nerve often caused by high pressure).
I still remember that evening walk when I got trapped into severe pain in the Lumbar region. Initially, a plethora of clinic-aid investigations was done before the diagnosis followed by extensive therapies like Steroids, Blood transfusion, Plasma exchange etc….. 38 pills were a part of my daily acid tasting platter accompanied with enough food restrictions when regular episodes of diarrhea & body pain were claiming rights over me, signaling something very irrational was around the corner. To my utter shock, though everything happened in slow motion but was completely out of my control.
As Bear Bryant once said ”In a crisis don’t hide behind anything or anybody. They’re going to find you anyway” therefore I took the challenge of trying to break-free by shifting the doctrine of focus towards Positivity, as conquering tough situations is hard but isn’t just physical. Though it’s been a long journey for me, this struggle has seen me grow as an individual as I denied being a glove-puppet of this circumstance instead, flaunt commitment towards regaining the lost thrown of wellness and reflect what shining-armors did differently to emerge from unexpected difficult situations.
A Rare Disease (RD) is identified, that affects fewer people across a broad range of possible disorders. According to World Health Organization (WHO), the number of people affected with (RD) is less than 5 per 10,000.
In India, it’s back-breaking to crack the code of conduct with as dense a population of more than 138 crores which even increases the frequency of (RD) when compared to the rest of the world. Mahatma Gandhi once said ”You must be the change you wish to see in the world” therefore this is not about the diagnosis or medicines but coming together for a cause as a voice taking ownership to infuse awareness and remind ourselves that an (RD) patient’s journey begins much before diagnosis. These Casanova typed diseases need special lenses as symptoms are diverse leading to cases even being misdiagnosed. A draft report released this year by ‘The National Health Policy for Rare Diseases’ acknowledges the annual cost of treatment for some may vary from Rs 10 Lakhs to more than Rs 1 crore per year.
Though this journey has been a sketch of mixed-bag with a 180° transformation in cultural & socio- eco state, food-habits, financial & health repute, I’ve come a long way from being bed-ridden in 2016 & 17 to being more independent as I write this article, my food-habit curve shows signs of normalcy, the clouds of skepticism have withered and a sure-shot reduction in medicinal intake is around the corner, etc…
May their attitude be in-charge and return where one belongs.
I wish to hear from my readers if I have collided with fatigue by positively Accepting my today or is it the right way to go ??
Rachit Shah, master’s in business management with over 13 years of Investment Banking experience (had to quit because of these conditions), fond of long-distance running (for sure will get back soon) with leisure interests like playing table tennis (a drug-free therapy) & volunteering projects (extending help to patients & families to create a difference).