THIS PETITION IS ALL ABOUT RAISING AWARENESS OF RARE HEALTH CONDITIONS AND REQUESTING AUTHORITIES TO HELP THE COMMUNITY. 

I learned quickly that alone, I'm rare, but together, part of a strong community. I am referring to the community of individuals fighting Rare Health Conditions respecting no geographical boundaries and age barriers. In the majority of cases, it is known to target children with limited/no treatment and minimal survival rates. World Health Organization (WHO) defines a rare disease as often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population.

Do we need to increase awareness of such conditions?? Yes, of course, if we wish to avoid mortality and morbidity. India is home to 70 million people, suffering from rare diseases. And I am one of them!!

Each of those moments is still so alive…. For the first few days, what seemed mild got worse when I got trapped in leg cramps accompanied by an aggravating pain in the lumbar region, surfacing that my encounter with time had just started!! Wasn't it just a relaxing activity, my usual evening jog session? Yes indeed!! After a detailed medical evaluation, I got diagnosed with a rare disease called Isaac Syndrome (a diverse disorder as a result of muscular hyperactivity resulting in muscle cramps, stiffness, walking difficulties, fasciculation, fatigue, etc.) accompanied by Membranous Glomerulonephritis (a slowly progressive disease of the kidney), Lymes (a bacterial infection that can be spread to humans by infected ticks), and Glaucoma (an eye condition which damages the optic nerve often caused by high pressure).

Did I have enough information? Was someone else also going through it? Was I getting the right treatment as it's so uncommon? How could I get help? Would I ever be cured? But, before these thoughts stabilized, my life had already changed by 180° from a cultural, social, economic, and health perspective.

I wish I was diagnosed earlier as the damage could have been controlled.

India spends only 1.28% of its GDP on health. Every allopathic doctor in India caters to at least 1,511 people, much higher than the World Health Organization's norm of one doctor for every 1,000 people. (source:- Ayushman Bharat Digital Mission: Big opportunity for healthtech startups | Business Standard News (business-standard.com) ''How many patients get access to the right & early diagnosis, adequate medical facilities with affordable treatments?'' If just a few fortunate ones, then let's not forget to contribute to a society that suffers from these 'Rare Casanova typed disorders'.

Public awareness, media interest, training of healthcare professionals, financial assistance, government support for these conditions is low, and, as a rare disease patient's journey begins much before he or she is diagnosed, all I'm looking for is to create awareness and demand an equal society for patients and their families to safeguard the millennials. In agony, we often tend to silence ourselves therefore please consider being the voice of such people and sign the petition so that ‘together’ we are stronger while approaching healthcare agencies and government establishments which can create a difference.

The fact that you read all the way through makes me feel:- HEARD.