We Talk Congenital Central Hypoventilation Syndrome (CCHS)

We talk Congenital Central Hypoventilation Syndrome (CCHS) with Jay Trivedi. Jay is a 34 year old individual diagnosed at birth with an invisible disability known as Congenital Central Hypoventilation Syndrome (CCHS). This disability is very rare and it involves a genetic mutation impacting the respiratory system. There are approximately 2000 cases of diagnosis worldwide. Patients diagnosed require mechanical ventilation during sleep. However, some patients require mechanical ventilation 24/7. Each patient's diagnosis is different. Some other symptoms of the diagnosis can include poor eyesight, poor temperature controls, and cognitive delays in young children. Most patients with CCHS can live full and healthy lives. They can achieve an education, build a successful career in the job market, and have families. Although there is no cure for CCHS and very little research is being done, CCHS Family Network and The CCHS Foundation are working together to continue raising funds and encourage friends/family to donate so the money can help go towards research and education.   Although Jay has been living with this extremely rare and invisible diagnosis, it has never stopped him from achieving his two main goals, which are achieving an educational degree in Business Administration and gaining work experience needed to become successful in today's job market. Currently, he works full-time at one of the biggest retailers, Walmart. Jay is a volunteer advocate and member of two well-known disability organizations called The CCHS Foundation and Diversability Leadership Collective (DLC).  On a professional level, Jay is heavily active on LinkedIn where he networks with individuals who can resonate with his life experiences.  Follow Jay at jt.trivedi on Instagram Show transcript bit.ly/3UKUymI