ॐ नमः शिवाय
I’m Shyam Narayan, a 21 year old social activist, entrepreneur and the founder of Qrishn, a bootstrapped start-up. I founded Qrishn with a motive to reduce the rate of the the personal, professional and social problems that people with rare disabilities face in their life.
Hemophilia and I
I was born with a rare genetic bleeding disorder Hemophilia-a (severe level) and wasn’t diagnosed until the age of 12. By that time, many complexities were caused like valgus deformity in both legs and so due to the disorder.
Hemophilia is an inherited bleeding disorder. With this condition, the blood does not clot as it should, which can result in spontaneous bleeding and bruising after surgery or other injuries. There’s only one temporary treatment available for hemophilia-a, i.e., I.V. injections of Factor-VIII. It is very expensive, even the wealthy ones can’t afford to buy 100% of their required doses. The dose depends on the severity level of hemophilia (mild, moderate and severe), body weight and current condition (major bleed, minor bleed, etc.). Severe level patients like me require 100% dose 2 to 3 times a week. So either I have to suffer the pain of bleeding and swelling or the injections.
According to my parents, hemophilia showed its symptoms since I was a few months old. External prolonged bleeding from lips, swelling bumps on forehead (I remember this as this used to happen till my early teenage) etc. were the early problems. The problem is that not a single doctor was able to diagnose the real cause. During the lips bleeding thing, the test result showed issue of prolonged bleeding in the blood sample but the doctor said it was normal and will fade off with increase in age. Later on some doctors said it was some kind of acute rheumatological disease that occurs due to cold.
The worst thing that happened was a doctor from the “one of the top govt hospital known in India” prescribed to take bone T.B. test and idk how the test results came positive. Unfortunately, I took the prescribed medicines of bone t.b. that caused breathing issues, extreme weakness and increased the frequency of bleeding episodes even more. I stopped taking the medicines and took another test at a different lab and the results were negative. Did that again just to confirm and when I discussed this with some others doctors and the lab, all of them said I never had the disease, it must have been just a mistake in the 1st test. It’s very normal for them to say this but they have no idea what mental and physical problems I went through due to that one wrong test result.
My right knee was already damaged but something worse was yet to happen. In my 10th standard, I took hepatitis vaccine that caused excessive bleeding in my left knees that lasted for 7 months and eventually cause valgus worse than in my right knee. My left knee joint is more severely bent than my right knee is.
Valgus deformity is defined as a tibio-femoral angle of greater than 10°. Typically, the deformity is the result of changes to both the bony and soft-tissue components around the knee. Due to prolonged, repeated and untreated bleeding in my knees, the synovial fluid turn hard and caused the deformity in both my knees. Other than these, bleedings in waist locked some veins that eventually turned my thigh skin insensitive and entire leg week. And on March 31st, 2021, I suffered severe anaphylaxis attack which happened due to a substandard factor-viii medicine. Blood-pressure, malnutrition and other health issues came as bonus.
All these fuckery of the medical science messed me up really bad. Both physically and mentally. I started exploring more in medical science and thought of pursuing it as a career. As I’ve visited a lot of hospitals, like PMCH Dhanbad and Patna, Govt hospital of Burdwan, RIMS Ranchi, Another hospital in Patna that I can’t recall the name of, AIIMS Delhi, LNJP Delhi, Doon Dehradun, AIIMS Rishikesh, CMC Vellore and some more, I have seen various cases of different disease, observed the studies and work system of the professionals. Things were more disappointing than inspiring. Read hundreds of research papers, volunteered in NGOs, societies and did lot of stuff to learn more. Always keeping update of the latest research works of medicines and all. BUT! when the time came to chose this modern medical science as a career to find out what can be done, my guts didn’t allow me to do so. Reason were the things I’ve observed didn’t look good to me. I’m not trying to defame the medical science, I’m just saying that I didn’t think it’ll worth putting so much time and effort with almost no hope for a positive result.
Now, since I started and left the path of medical science, the question was how else can I try to solve the problem that I aimed to do?
Entrepreneurship and I
Since my early teenage years, I’ve been exploring the startup ecosystem in our country and eventually increasing my interest in innovating something that helps the society in any manner. I didn’t have any idea about social entrepreneurship at that time but I used to volunteer in various seminars and events conducted by NGOs and Hemophilia societies in my region. Later on, I completed my intermediate and tried to pursue higher studies in medical science but my physical condition didn’t allow me to do so. But my ambition to bring a change was not affected at all. I love to help others in any way I can possibly help and doing this always gives me a sense of happiness.
I consider myself a critical thinker and a problem solver. A wide range of things catches my interest and I’m always exploring and learning more about everything. While being through all of the troubles, I’ve developed a natural tendency of emotional resilience. I’m highly motivated, ambitious, and have practical aspects of life rather than philosophical ones. I believe that such qualities bring better progress in life. I believe that experiencing life is the best way to learn about life itself. This inspires me to accept new challenges and turn them into opportunities.
Being a single child in a middle-class family, my life has always been mediocre. Residing in the world’s yoga capital, Rishikesh, I am doing my graduation in commerce and started my entrepreneurial journey alongside. I chose commerce after leaving medical science just to gain some knowledge about the business and corporate world.
However, my entrepreneurial journey, just like most of the things in my life, has not been so great. I started as a digital marketing and content management freelancer. My work was going quite good. When I was in 11th, one of my classmate happened to be an aspiring singer. Him and I with some of our other friends planned to create a music band. Things in the beginning, went pretty good. A couple of cover song videos were launched on YouTube and we were about to launch 2 originals too. BUT, the singer stole my hard earned money that I kept for the promotions and ran away to Mumbai. IDK what happened to him later, but the band was stopped right there.
During my mid term in intermediate, I launched a tech blog as well as a forum. With help of one of the well-known bloggers of India, my forum’s popularity escalated within weeks. A lot of bloggers from across the country joined the forum. So what went wrong in this? An assistant of one the richest domainer (person who flips/scalps or auctions brandable domain names) of India, copied the concept. And since they had a really strong network and a lot of money, their forum outplayed mine in no time.
Since August 2016, my health started degrading even more and things just kept going downhill till date. In 2018, I had to stop doing my digital works of social media marketing as my health disrupted all my works. However, I was working on developing a semi automated software and I continued to work on that. Mainly because despite my health, positive or negative outcomes of projects etc., I have to look for a way to earn some bread for myself.
Qrishn – The Ideation of Everything
Now, as I previously mentioned that I suffered anaphylaxis attacks, that incident shook me inside out. I went into severe depression, laying and crying on my bed all day all night. Everything that I’ve been through since ever just flashed in front of my eyes. The thought of ‘solving’ hit my mind again. This time more focused, looking for a more precise way to tackle everything.
I ideated Qrishn in order to find, build and execute a solution dedicated to dissipate the suffering of people with rare disabilities.
Why this? Let me share some bits of thousands of stories I’ve experienced. Please read it with patience as it is one of the major reason behind my initiative.
I mentioned about anaphylaxis, it was caused by a recombinant factor viii injection by novo nordisk. IMO, such risk-carrying medicines shouldn’t be allowed at the first place. Even if they want to, the company should inform the distributors, doctors and patients to take a allergy or hyper sensitivity test before infusing this medicine. Mentioning such life-threatening adverse reaction in one line on a random page of their website wouldn’t work.
Before continuing, the basic difference between recombinant and plasma-derived factor viii is that recombinants are developed by lab tech without involving human blood. And plasma-derived factor viii, as the name describes itself, are extracted from human plasma. Not only me, but a significant amount patients need plasma-derived factor and are allergic to recombinants.
Another patient from haldwani was admitted in AIIMS Rishikesh and needed plasma derived factor viii for surgical procedures. The guardians requested the state gov hospital (only hospital where f8 is made available) to avail the prescribed dose but they denied to do so. A call from the health directorate was made to the c.m.o. of that hospital they dared to disobey directorate’s order too. At last, luckily, the directorate was able arrange some from some other place. Not only this, there have several such incidents but (then) mf in charge of f8 purchase always opposed to avail plasma-f8. I met that c.m.o., that old age lady can’t even read but holds the seat of cmo! wtf even? That in charge enjoys foreign tours sponsored by the alt company, built several real estates, got higher position in the npo and a lot more, all at the cost of patient’s lives.
In another state, long ago, like 7-8 years back, duplicate factor viii was being manufactured and injected to patients. Not just factor viii, but every medicine in the hospital’s store was duplicate. The superintendent and everyone involved burned the store a day before the raid. IDK what happened at the end of the matter but I heard that everyone was summoned to the court.
I can literally write an entire novel by compiling whatever I’ve seen in the society, and the tortures I’ve been through.
Someone’s suffering became a source of someone else’s luxurious lifestyle. Selling more problems in disguise of a solution is the core of modern day businesses. What could I even say! I’m already risking a lot by mentioning such things on my post. Might even delete the part when needed.
Ok this was about the medicine part. Let me tell you something more. My admission was rejected in 2-3 schools because of my disease. I had an ear infection in dec 2016, several ent doctors denied treating and referred me to another as they didn’t want to take any risk. So these are pretty common issues in hemophiliac lives.
Due to obvious professional reasons and my personal life experiences that previously mentioned (fraud, ideas getting stolen), I cannot share whats and hows of my project, but I’m trying my best. Pushing my limits, experimenting stuffs in various directions and doing a lot of crazy stuffs.
All I can tell you now is that I’m trying to build an “another way round” solution with Qrishn.
- Lack of knowledge about the disorder even in the professional field, i.e., medical professionals, and discrepancies in treatments. Already mentioned above that I was diagnosed with bone. T.B., and how several doctors denied to treat my other health problems as well.. Not only this, it is said that physiotherapy strengthens hemophilic muscles but allopathy still hasn’t figured out specific physiotherapies for hemophilia. Until few years back they were experimenting with physiotherapies used for paralysis patients on hemophilic ones. More than double of the known hemophilic population are assumed to be remaining undiagnosed due to lack of awareness.
- Lack of understanding in patients, and misconceptions. OK, this messes up my mind really bad. Believing in stupid things, denying medical reports. Denying family planning. Hiding the condition from everyone else as if hemophilia is an STD. And shitload amount of things. I’ve been volunteering in events and stuffs and then I meet such people. I once met a couple who’s 1st child was diagnosed with hemophilia and still that couple had 4 more children (yes, after knowing that the mother is a hemophilic carrier and their first child is a patient now).
And I believe I don’t have to explain y’all how bad the older generation follows the ‘past live’ things. If you’re suffering, you must have done something sinful in your past life, so this is the result of that. Another thing is, we have a culture where people are so convinced about suffering being an integral part of life that nobody is even willing to solve their problems. Even if I’m able to build a solution, how am I supposed to help those who don’t even help themselves?
- Funding. The first time when I ideated Qrishn at IIT Madras, I was also advised to consider making it an NGO and look for govt. schemes. I checked the TnC of govt. schemes and anyone can tell that those are retrogressive to any NGO structure, mine’s not even an NGO.
All these mouths often say in public that “it’s not about money”, but in fact, if you take a focused look, it’s all about money. If I pitch to angels, VC or PIs, all of them will ask the same question. How is Qrishn going to make money? And at this point, atleast until and unless the MVP is completed, I’ve no idea how Qrishn will make money. And it’s really very rare that any angel funds the MVP, that too in a social enterprise.
- I learnt pitching, F.M., and lot of entrepreneurial stuffs. Attended various seminars of CISCO, NASSCOM, Startup India, Startup Uttarakhand, CEO-FAM, etc. Trying to learn everything about starting-up. In the very first seminar I attended, one of the guest cum judge said in his speech that ‘solopreneurs do not exist, they’re a myth’. Second, how many times you’ve seen posts like ‘if you run after making money, you’ll never make money’? but Qrishn is all about making people make money! Also, the mentor that taught me pitching, financial modeling, things about unfair advantage, etc. told me that the hardest thing to build as an entrepreneur is a social enterprise, only 1 in a million succeed. And also not to forget the assh0les of the society, referring to the people like the one who misuses funds of patients medicine store, takes bribe from alt medical companies to supply their substitute of the actual medicine, even if that’s life-threatening. Illiterate, greedy one’s being the authorities. And my favorite, the capitalists who sell more problems in disguise of solutions to build their fortune. Qrishn will have to defy every single one of these challenges in order to be able to help patients. This sounds like a pre-release trailer of an action movie but in reality it’s depressing.
Hmm. With no money, no source of income and a curse like hemophilia, things are really hard to work upon. Still I’m doing my best.
I asked for help from a lot of people. Not in form of cash but knowledge and expertise they have, guidance and support but not a single name gave me a hand. I sold my self-respect in seek of help yet failed to get any. This was quite obvious for me and I already knew their answers even before asking for help from them.
I’ve prepared a multitudinous structure of Qrishn but unfortunately cannot put it on testing due to lack of funds. I already know that it wouldn’t be successful in one go and I’ll have to redevelop it multiple times and do multiple test to build the best version of it. I’m looking or a way out and hoping for the best.
I’ve lost the game so many times yet determined to to win. I cannot afford to lose this time. As I believe that there’s a solution to every problem, we need to either find one or build one. Since I didn’t find any, I’m putting in efforts to build one. I need everyone’s blessings and the Almighty’s companion to make this happen. Everything bad that is existing in today’s world took a long time to build up. Anything good that could possibly dispel the bads will definitely take some time to build. I hope that eventually all my efforts will bring positive results and I’ll accomplish what I’ve started. I’m on a journey to become my ideal self. To be someone whom I’ve always needed. Let’s see how it goes.