It was over a hearty breakfast with my doctor at his residence in Jaipur (India) when I decided to pen down articles, a conscious effort to spread awareness on ‘Rare Health Conditions‘ realizing that even Google was ignorant while answering my queries.
Revisiting the dark tunnels of my memory, it was a horrifying evening walk in 2016 that changed my life when I got trapped into leg cramps with an aggravating pain in the lumbar region. My night was painful and unaware that my encounter with time had just started. A plethora of clinic-aid investigations was done before being diagnosed with rare diseases like 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), Glaucoma (an eye conditions that damage the optic nerve often caused by high pressure). The diagnosis was followed extensive therapies like Steroids, Plasma exchange, ACTH injections etc….. 38 pills were a part of my daily acid tasting platter accompanied with food restrictions when regular episodes of IBS, diarrhea, body pain, weakness & muscle loss were claiming rights over me. Fluctuations in general-stats like sugar levels, BP, weight etc… surfaced pendulous effects. I had to make changes in my wardrobe as weight melted off, from 80kgs to 57kgs. It’s unbelievable how I didn’t feel hungry post-lunch until 8 am, the next morning.
Though my 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. 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 there has been many trials and errors but all the struggle has seen me grow and raised my bar of confidence to emerge from unexpected difficult situations.
Mahatma Gandhi once said ”You must be the change you wish to see in the world” therefore this is not only about my journey but coming together for a cause as a voice taking ownership to infuse awareness and remind ourselves that a (RD) patient’s journey begins much before diagnosis.
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. These ‘Casanova typed diseases‘ need special lenses as symptoms are diverse leading to cases being under or misdiagnosed. A draft report released this year by ‘The National Health Policy for Rare Diseases’ acknowledges the annual cost of some treatments may vary from Rs 10 Lakhs to more than Rs 1 crore per year. Therefore, through platform’s that matter, my endeavor is to raise awareness on Rare Health Conditions in India.
I put my pen down, promising to share my life changing experiences in the upcoming articles which recouped my life from being caged towards independence, only request to readers would be to share any conducive food for thought, as bailout is not an option but a compulsion.
BY_ Rachit Shah
Hello, I am Rachit Shah, an ex-Investment Banker based out of Mumbai, my experience journey was a bag full of goodies, fond of long distance running with leisure interests like playing table tennis & volunteering projects. Today, I thank God, for getting my life rolling from a two years bedridden situation after diagnosis to now leading a life of independence, simultaneously searching for a permanent cure.
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