My name is Jay M. Trivedi. I am a 22.5 adult diagnosed with CCHS (Congenital Central Hypoventilation Syndrome) and HD (Hirschprungs Disease). Due to the CCHS rare syndrome, I have a trachea and it has prevented me from traveling abroad to India and has prevented me from swimming. I am currently and have been an only child living with my parents. During night time, I am required to sleep on a ventilator (respirator). The respirator I am placed on is a PLV 100. However, in December 2013, I had surgery where a pacemaker was inserted. In summer 2014, I plan to have my trach removed because during winter 2014, I plan to travel abroad to India for the first time in 22.5 years.
Even though I have been diagnosed with these health problems, I do not let it prevent me from doing the things I love to do. I am able to attend school/college, hold various jobs, doing fun activities, volunteering activities, and joining after school/college activities. And most importantly, I don't let these syndromes or diseases stop me from making friends.
I hope my story has inspired you to understand my success and difficulties. Every day, I always dream of not having a trachea and having more and more freedom.