Rare health reforms to re-form our fighting spirits.
As getting back to our mother’s womb is impractical, we did better in dire straits & fight back, stimulating our pissed-off attitude towards healing. Our combined endeavor to help global victims of Rare Health Conditions acting opposite to the Law of Marginal Utility, could walk the talk and get counted. The Covid episode is opposing our delusionary footing & blowing the bugle loud & clear to act sane on future health hazards in tightening arrangements, to do otherwise is to settle with severe repercussions for our clan. Therefore, this article is to voice a gradual evolutionary phase to compete with true globalization.
According to the World Bank 34% of our population resides in urban areas & expected to be 40.76% by 2030 which means honestly our clan is mirroring & being disrobed by the western culture in our daily platter which on a macro level surfaces us to more unique disorders (like covid & rare conditions). A gig’s world transformed into serious profiling in March’16 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) and Lymes (a bacterial infection that can be spread to humans by infected ticks) and the journey still continues……
My encounter with time had just started and I had to let go working as an Investment Banker. A plethora of clinic-aid investigations were done which interpreted symptoms. From Steroids to IVIg to Plasmaferis is to shots of ACTH injections to pain killers to immuno suppressive agents to intestine related medicines to alternate medicinal therapies, as high as 38 pills were a part of my daily acid tasting platter with enough food restrictions due to side effects like shooting sugar levels, fluctuating blood pressure, IBS, disturbance of stomach lining, diarrhea etc…
Time & again the triumph did likely be fleeting when the impact of medicines & procedures showed limitations as health has proved a tragic experience wrapped in bonkers, making me crawl through broken glasses shifting focus on the journey than reaching the destination. My torn socio pieces are in splits as symptoms display an indefinite trend which might start the day with a good breakfast but gets jittery by lunch and ends with a bed ridden dinner.
A silver lining approach but a question that haunts me more often than ever:- How many more bones will be broken before the ultimate glory strikes ????
Learning’s from Practical Encounter & key Proposition
1) The holy trinity between the doctor, a patient & the treatment becomes a dangerous Bermuda triangle when there are communication gaps
2) These so called ‘Casanova typed disorders‘ need extra efforts by inculcating optimum discipline and lifestyle corrections
3) When re-visiting books, not an option :- I relied on some anecdotal experiences that didn’t put me down :- Paying attention to body postures (curbs pain & channelize uninterrupted flow of energy), ingraining a self motivating attitude (acceptance is virtue), sports medicine (mind distraction, physical activity), wearing loose clothes (to avoid nerve compression & feel relaxed), managing stress levels (meditation, music therapy) etc…..
4) Insurance support system for expensive treatments could be a savior
5) Sports Medicine :- a specialization which amalgamates both the medical field & fitness. I decided to take up Table tennis (a drug- free therapy) as players on sports field and those battling chronic ailments have much in common. It helped me smile & simultaneously pound reminders to my psychometric abilities that any suffering, is as constant a phenomenon as temporarily losing a game
6) Instead of being cranky, optimum utilization of available resource could work wonders during the treatment duration & help ease financial, social & personal enforcements
7) Origin-centric – introspection in identifying the genes culprit guilty for the condition rather than attacking only the symptoms is key to evolution
8) Millennial revolutionary techniques like Artificial Intelligence (AI) are electrifying & should be used to trace high- risk patients, recognizing symptoms & early diagnosis
9) Corporate Social Responsibility (CSR) :- serious contribution towards meaningful research in this area could prove a backbone
10) Central Information Portal :- for geographically dispersed choric disease patients to share concerns & experiences, information on government initiatives, doctors & medicines, comprehend innovations, explore cost effective measures & discover remedies
11) Our ‘Monkey Brain’ needs utmost attention when Manmade crisis manifests in God gifted body
12) Adding HUMOUR can be transformational easing care takers, family members & oneself. I still credit cartoons for a dopamine experience on a tough day
13) Amending lifestyle & listening to what one’s body says can work wonders (habits pertaining eating, sleeping, drinking etc.. )
14) On the back burner:- high time when Institutions, Organizations, & Support groups write & re-write the future as OUR burden of sufferings could only be relieved by the balm of meaningful implementations of an evolution.
The doctrine of necessity shifts our focus to taking concrete decisions in planting tress of wellness under which our upcoming generations could sit with carnival of joy. With a population of more than 138 crores, an obligation for constant up-gradation in every genre is a must. From oxygenating our Educational systems to injecting steroids into current Research Infrastructure to ventilating Awareness to new-born activities in Technological advancements to muscle- charged Ruling authorities to infusing endorphin rush in Supply chain circuits to re-design health graphs by effective implementation of recourses is the need of the hour.
Therefore to regain our thrown of well-being it’s important to ignore the current obstructions & stand tall in OUR falling world, gracefully accepting the meaning of Rare where RARE is an alien language out-casting majority. At the same time acknowledging each one’s struggle beyond words adding that a healthy consolidation of elements like directional attitude, sense of spirituality, physical tolerance and psychedelic efforts essential to surpass the dependency on prescribed pills will definitely assure a prayer helping hand to recovery.
Cutting to the chase I patiently wait for the Midas touch, my only request to readers would be to share any conducive food for thought, as bailout is not only ‘an option‘. Though at present this misty condition seems in an abyss and baffles me occasionally with some recovery code to be cracked, I still wish to thank my doctors & family’s surrendered tone in aligning my journey & adapting a close-fisted voice in making this rare disease look common.
I strongly deny to revisit the dark tunnels of my memory & be peppered with filthy hand writings on my body & YOU ????
