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This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health.
My health Research began when I had a list of unanswered questions regarding my rare disease!!
As a kid, I was taught to keep my pinky promises and much of my academic performance was based on them. Apart from getting goodies, the purpose of studying at school was to gather knowledge, social recognition, financial security, adherence to responsibilities, and more responsiveness. Were any of these possible without Research?
My first thought about getting diagnosed with Isaacs’ Syndrome was, what makes it rare? Is there limited public awareness or information about it? Is the treatment difficult? Is there no permanent cure? The end result was a list of many unanswered questions regarding the disease. Following the rare disease diagnosis, I also discovered I was suffering from a couple of chronic health issues like Lyme disease, Glaucoma, and Membranous Glomerulonephritis and therefore it became more important to have the right information to deal with it all. It’s a global concern when millions wait for their unmet queries to be addressed. We could find our answers once the unknown is known by dwelling deeper into research.
Do Words of Research matter?
Research, a necessity and not a luxury
India is a country with a vast population of 1.51 billion. The research will always be the key to a changing society and a tool used for growth. It’s an inherent part of our nature whether we admit it or not that research will directly or indirectly be co-related to everyone’s life, similarly and will act as the backbone of the healthcare industry.
Examining the basis of why a gene is not functioning properly in a disease can be very helpful in finding out more about the gene’s normal functionalities. To know more about our roots and our functionalities, it is essential that we delve deeper into the subject. Many chronic and rare ailments have been studied less than the common ones and the gene involved in rare are often poorly characterized.
Generates new ideas and develops newer treatments and cures
We have always seen that when new knowledge is curated and put in the right hands, it becomes a game-changing evolution for clans. Applying various scientific methods and evaluating them under the light to develop new treatments and cures can solve specific problems. Being solution-oriented is the way forward and it can only get effective when individuals are supported through innovative research-led calls, connecting researchers, listening & evaluating the work of others, and providing infrastructure. It’s a great tool through which we could expand our knowledge base, observation skills, experiments, and final implementation.
Increases public awareness
Public awareness is mobilizing the masses into taking action. These actions depend a lot on empowering them with health literacy through educational resources.
Ways by which we can join together as a unit, using languages that are easy to interpret, sharing more and more of patient experiences, involving media, health practitioners, and advocacy groups, and asking support by the government.
An attempt to spread the word of knowledge in rare and chronic health conditions:
Ordinarily Rare is my initiative to spread awareness of rare and chronic health conditions. It is a diary of six long years of my battle, various experiences, the aftermath of my diagnosis, various takeaways, and much more.
Rewinding the pre-diagnosis moments gives me goosebumps when the confusion, fear, and uncertainty in the family were at their peak. I was diagnosed at a time when my father was battling Parkison’s disease, and the news of my diagnosis was enough to blow the entire family apart. Those were days of isolation when we literally ran from one place to another to find whatever little information, we could get our hands on. This gap of not having access to the proper information left us very anxious and that is when I decided to start writing my experiences and share them with others to spread awareness through the platform of Ordinarily Rare. This community-building process of sharing experiences with others had multiple perspectives with a common goal of creating awareness and references.
It’s time we prioritize and research more seriously to fast-track our problem-solving capability. Though times are changing, and some diseases are not considered exotic now, a lot is still unfinished. We are entering a time when the number of rare and chronic disease cases is increasing on a daily basis. Undoubtedly, efforts are being made worldwide to pool information and make it easy to access with the help of artificial intelligence, but these need to bear fruit soon. We need a promise that could make life better by making tough moments bearable and look forward to a better tomorrow not only for ourselves but for generations to come.
In my experience, although years have passed since my diagnosis however the burden of having a rare disease is as yet hardly understood.
