The change came much faster than expected when I got diagnosed with a rare medical condition
At times, my dark memory grips me to a life-altering event between the months of Feb’16 when Leonardo DiCaprio (one of the finest actors in Hollywood) won his first Oscars and World Health Day in April’16.
Between these two diversified events another life experienced a tectonic shift during a jogging session on an evening in Feb’16. The change came much faster than expected when I got diagnosed with a rare medical condition, 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) and the journey still continues…… If you had told me a couple of years back, I wouldn’t be writing this note, instead planning into my future. A part of me is still surprised, as I was all healthy & hearty with no experience of visiting doctors.
Graduating to helpful millennial artificial intelligence could recognize forthcoming dilemmas by unfolding mysteries on exotic doctrinal concepts like gene & cell therapies which could in-turn bridge the abyss of an holistic approach missing with Specialists to Doctors to System officials.
As Anne Frank once said ‘’ If I haven’t any talent for writing books or newspaper articles, well, then I can always write for myself’’, I thought of penning down a lot from my personal experience, hoping to help others suffering from Rare Health Conditions. World Health Organization (WHO) defines a Rare Disease when the number of people affected is less than 5 per 10,000. There are 5000 and 8000 rare diseases, most of them with a genetic basis.
The Covid episode is opposing our delusionary footing & blowing the bugle loud & clear to act on future health hazards in tightening arrangements, to do otherwise is to settle with severe repercussions. I, therefore, wish to be ‘The Voice’ initiating a gradual evolutionary phase to compete with true globalization as dealing with Rare Health Conditions need extra efforts:-
As a victim, I’m tempted to wonder why in emerging economies the sufferer, treatment infrastructure & directorates are insured with apertures in promises & authenticity. I appeal by adhering to the customs and request for government initiatives percolating to ground reality. Incentives like compulsive Corporate Social Responsibility (CSR), affordable & transparent Health Insurance, a dedicated rare disease portal could comprehend the basics and extended an helping hand to geographically dispersed choric patients and explore cost-effective measures to discover remedies. Graduating to helpful millennial artificial intelligence could recognize forthcoming dilemmas by unfolding mysteries on exotic doctrinal concepts like gene & cell therapies which could in-turn bridge the abyss of an holistic approach missing with Specialists to Doctors to System officials. Considering the costs involved a onetime assistance upto Rs 15 lakh announce in 2020 under the umbrella scheme Rashtriya Arogaya Nidhi should be re-considered.
From a community’s perspective though we need to stand tall in OUR falling world and gracefully accept the meaning of RARE till mother-wit strike chords offering affordable robust infrastructure prepared to tackle complicated track records, I wish to share some key learning’s from personal experience which could help ease our journey :-
- There are times when going by the book is not an option :- I relied on anecdotal experiences than proven evidences before deciding on small but important miscellaneous changes by paying attention to body postures (curbs pain & channelize uninterrupted flow of energy), ingraining a self motivating attitude (acceptance is virtue), wearing surgical mask while being exposed to a crowded place (helpful while consuming medicines like immunosuppressant’s), wearing loose clothes (to avoid nerve compression & feel relaxed), managing stress levels (meditation, music therapy) etc…..
- Insurance support system for expensive treatments could be a savior
- Sports Medicine :– a specialization which amalgamates both the medical field & fitness. I decided to even take up Table tennis as a drug- free therapy
- Instead of being cranky, optimum utilization of available resource could work wonders during the treatment duration & help ease financial, social & personal enforcements
- Our ‘Monkey Brain’ needs utmost attention when Manmade crisis manifests in God gifted body
- Adding Humor to life can be transformational easing care takers, family members & oneself. I still credit cartoons for a dopamine experience on a tough day
- Keep informed about your health condition, try finding solutions with a fight-back spirit
- Adopting to new aspects of treatment can contribute to healing: – Yoga, Meditation, Walking, Calmness of mind & body etc….
- Changes in lifestyle can work wonders (eating, sleeping, drinkinghabits etc.)
- Respect People:- one of my biggest strengths in this tedious war field. I never realized when it became ‘our’ journey from ‘my’ journey
As instances like Covid re-write the rules of the game each one of us from Institutions to Organizations to Platforms & Support groups should write & re-write the future as OUR burden of sufferings could only be relieved by the balm of meaningful implementations of an evolution & plant tress of wellness under which our upcoming generations could sit with carnival of joy.
Rachit Shah (pseudonym identity for writing articles to create awareness) has master’s in business management with over 13 years of Investment Banking experience (had to quit because of his healthcondition ).
