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Winning the Lottery You Never Wanted to Enter – The Underbelly of Rare Diseases

What happens when your health becomes a statistical anomaly? When it falls into the no-man's land of biomedical research, overlooked and underfunded. Welcome to the world of rare diseases – or as some like to call it, winning the lottery you never wanted to enter.




Big Baddies Vs. Naked Mole Rats


Ever seen one of those wildlife conservation ads focusing on polar bears or pandas? Well, if diseases were endangered animals, rare ones would be naked mole rats - slightly less majestic and considerably more underrated. But here’s something that might surprise you: these elusive "naked mole rats" affect millions worldwide.


Cancer, diabetes or heart disease often hog the limelight in medical research due not only to their extensive prevalence but also their so-called 'marketability'. They're big baddies everyone loves (well...wants) to defeat. It is tragically ironic that being affected by a relatively 'rare’ ailment could feel quieter and lonelier despite living in an age where cat videos get millions of hits overnight.


Behind the Lack of Funding and Awareness


But why does this happen?


Reason number one - rarity equals lesser funding. With limited patients suffering from individual rare diseases compared with widespread ailments like cancer or diabetes, there's simply less incentive for pharmaceutical companies.


Reason two could very well be public unfamiliarity; how many times have you read about Alkaptonuria compared with Alzheimer’s?


Rare, Yet Not Alone


However, thinking this battle isn't worth fighting is like saying saving a small town doesn't matter because it's not an entire country.


The impact may seem minimal at first glance but zoom out and remind ourselves we're staring at 300 million people globally affected by such rare conditions—a jigsaw puzzle where each piece plays a significant role in sketching humankind's bio-diversified landscape.


It all boils down to remembering that behind every scientific name stands hundreds—even thousands—of real lives shadowed by uncertainty who deserve our attention equally aiming towards treatments giving them hopes instead of mere stopgaps. Reframing the narrative around 'rare' must underscore commitment rather than charity—it oughta champion persistence echoing within our shared human spirit transcending numbers birthed from laboratories becoming momentum propelling us forward towards innate fairness—not rarity—in healthcare access making us realise just how faultily selective our compassion can become when viewed through quantity prism denying quality experience its rightful voice even if hushed sometimes beneath biological statistics mass clatter.


Making Murmurs Matter

So what can we do other than slipping on lab coats diving into decades-long research? Start by acknowledging presence—learning about brave souls battling these hidden giants shaking loose apathy setting aside time understanding plus reverberating issue cascading beyond any singular person turning personal sagas communal chorus pulling back veil shying away offbeat challenges marching hand-in-hand defying aesthetics defining ethos making murmurs matter en route greater good anchored onto inclusivity equality reciprocity reminding ourselves stakes are sky high—for stakes compose people hearts homes dreams futures real stories woven unperturbed embracing colour thread embellishing humanity tapestry joy sorrow courage resilience laughter love—a story ultimately etching our names collectively restating high-value truth life life alone matters—all-embracing vitally importance finishing line mirroring finisher medals—tokens illustrating testament indomitable will enduring power integrity besides anything price ending invisible fight sworn secrecy struggle concealing significant strength discovery endeavour moving beautifully perfect albeit differently synchronized rhythm signifying bravura constellation gloriously unique stars radiantly resolute lighting up sky darkened otherwise blanketed generic enormity thence onwards blending striking unity revealing magnificent mosaic veiled beneath inconspicuous simplicity often overlooked still resonant unabashed celebration diversity delicately bridged upon spindly arch underlying commonality stitched gracefully against vibrant solidarity silent echo roaring applause unfailing daring ardour striving over catching horizon spread across reality amidst sacred odds seemingly insurmountable truly unmistakably essentially pertinently nobly irrevocably infectiously miraculously ours yours theirs mine hers his nobody everybody someone everyone most importantly undeniably definitely persistently determinedly completely passionately corporately unrelentingly unstoppably cooperatively consistently indefatigably mercifully unwaveringly thankfully proudly brilliantly lotteried optimistically vibrantly gutsily grittily energetically humorously triumphantly hopefully—all right altogether always conquer impossible till ‘impossible‘ unbeknownst amused rephrase subtly confidently ‘I’m Possible’.

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