The story of Jay
My name is Jay and I am 33 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 our respiratory system. There are approximately 2000 cases of the 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.
Being diagnosed with CCHS has never stopped me from achieving my goals and doing what makes me happy. I received an Associates of Science and Bachelor of Science degree in Business Administration. Currently, I work full-time at one of the biggest retailers, Walmart. My previous work experiences include working part-time at an adult day care center and working part-time at small retail store with pharmaceutical services CVS. Finally, I am an advocate and member of two well-known disability organizations called The CCHS Foundation and Diversability Leadership Collective (DLC).
I enjoy watching movie and television sagas such as Star Wars, James Bond 007, Fast & Furious, Mission Impossible, Marvel Cinematic Universe (MCU), and Spongebob Squarepants. During the summer, I enjoy visiting movie theaters and going to various museums. Finally, I love communicating with my CCHS Families on social media.
This is…MY LIFE MY STORY MY RARE DISEASE!