“I’m currently 33 living in Lansing, MI. I work at a local insurance company and am a Quality Analyst. A few of my job duties include interpreting business requirements, creating and updating manual test cases, and writing various test plans for internal software applications. I went to college with my service dog Noble from 2006 – 2011 and received my degree in Information Systems from Grand Valley State University. Here is where I met my wife (Megan) & we got married in 2015. Our daughter Clare was born in 2017. My life now involves chasing around after a 2.5 year old girl. On the off chance I do get free time a few of my hobbies include video games, watching & playing sports as well as riding my motorcycle. I also participate in a bowling league in fall & softball league in spring/summer. My service dog has since passed, however my wife really helps to make sure I never doze off without my ventilator. I also remind myself to take walks frequently throughout the day if I don’t feel well, as then tend to help me feel better. My advice for those with CCHS is to not let this limit you from doing anything you want to accomplish. While you may have to work harder to get what you want, all good things worth having require work, so don’t let anyone tell you that you can’t do something.”
“My name is Anna. I was born in March 1996 and I am from Denmark. I was diagnosed with CCHS when I was 11 months old. After a few months of hospitalization, a pediatric doctor figured out my diagnosis. I have always been mask-ventilated and I am currently using Vpap ResMed Lumis 150 with a custom-made mask.
Since diagnosis, my family has worked hard to make my life as normal as possible and not too much about CCHS. My mutation number is 20/25 so my CCHS is fairly mild. I did have a night-nurse until the age of 7, after that my parents decided to take over, and so I slept in their room for a few years until I decided that I had had enough, and wanted to sleep in my own room. Surprisingly, or perhaps not so surprisingly, this transition went smooth and I have been independent since.
My parents thought it was important for me to become independent, not just for their own sake, but for my own future’s sake, so my mom introduced me to all the equipment at the age of 12, so I could learn to clean my mask myself, organize tubes and so on.
Gaining knowledge on how to handle CCHS from an early age, has led to me testing my independence, and my parents’ nerves, a lot of times during my young years, but it has also led me to become ultra-self-reliant as an adult. I have lived abroad for two years, but in 2018, I found my way back to Denmark. Now I live on my own in Copenhagen, without a nurse.
I am currently a nursing student in Copenhagen. I will graduate in the year 2021. My goal in life is to become an E.R. nurse at a ski-resort.”
“Hey there! I’m Kyla Hosoda, I was diagnosed with CCHS (20/27) shortly after I was born in 1990. I live in Las Vegas with my husband, two cats (Harley and Gatsby), and dog (Asher). By day I’m a receptionist for my dad’s company, and by night I’m a concert photographer. I’ve lived on my own for quite some time, as well as nurse free. I’ve had either whoever I’ve dated or roommates listen for my vent alarms at night, and if anything happened they knew to wake me up. I just want to say that while growing up with CCHS has proven to be quite a chore, living with it and maintaining it is just second nature to me at this point. Aside from sleeping on a vent, my life is 100% normal. I do what I need to do in order to stay healthy, and beyond that, I live my life like anyone else my age. Independence is totally possible for us CCHS’ers!”
“HELLO EVERYONE! My name is Jay M. Trivedi and I was born with rare genetic disorder called CCHS, also known as Congenital Central Hypoventilation Syndrome or Ondines Curse.
Currently, I am 28 years old and live in Shrewsbury, MA with my parents Charu and Mukesh. Even though the diagnosis has prevented me from achieving my dreams (going to India, swimming in open waters, etc.), the diagnosis has never stopped me from achieving the most important activities in life. I have accomplished both my Associates and Bachelors degrees in the Business Administration and Finance fields. Just recently, I completed my Pharmacy Technician Certificate and am now looking for full-time job as pharmacy technician. Currently, I have two part-time jobs at Walmart and CVS.
There are so many fun activities that I always enjoy in order to take my mind off the diagnosis. First, I always enjoy listening to music albums/artists from the Bollywood industry. Second, whether it is thru the CCHS Network or college, I like making new friends and keeping in touch with them. Third, I like to shop for the latest music, movies, television shows, and electronics. Finally, I always enjoy contributing to the CCHS Family Network each year.”
“Hi there I am Arianna. I live in a little countryside town near Venice, Italy. I am 25 years old, and was diagnosed with CCHS within the first days of life. My mutation is 20/25 and I sleep with a diaphragmatic pacemaker. I works as a secretary and adores watching Grey’s Anatomy. In my free time I love bathing in the swimming pool and reading books, expecially detective and love stories; among my favourite writers are Agatha Christie and Jamie Mcguire. I says that CCHS isn’t a curse at all, just a “strange” experience which lets me travel and meet other people.”
“Hi, I am Sarah and although I have CCHS, it is not who I am. I graduated from the University of California, San Diego in 2014 with a BA in Art History and Criticism. I have a Masters in Information and Library Science, Archival Studies from University of Pittsburgh. I work as an Archivist in Pittsburgh. Although I grew up in California, I love living on my own in Pittsburgh – there are lots of fun things to do here and the restaurants are great. I also love to travel, read, play the piano, sing, and ride horses. I volunteer at a therapuetic horse barn for kids with disabilities. I have a wacky sense of humor that not everyone always gets. My family call me “Sarahpedia” – because I can remember most anything I read.”
“My name is Nico Meyering. I earned my MPA at Binghamton University, where I was inducted into Sigma Alpha Lambda in recognition of my volunteerism, and have worked in the public sector in New York, California, and Texas. I’m currently a business administrator for the University of Pennsylvania. I’m a board member for the CCHS Family Network, where I help with new family onboarding, young adult projects, outreach, fundraising, and other initiatives.
In my free time I speak about life with CCHS, including a TED talk in 2017 and a speech for Hugh O’Brian Youth Leadership in 2019. I also buy and donate comic books to schools to increase student literacy levels. I live in Philadelphia, PA with my fiancee Brittany and our three cats: Apollo, Hera, and our kitten Hermes.”
“Hi there! I’m Madison Cashman and I am a 20/27 on the CCHS spectrum. I hail from Walnut Creek, CA. From August 2017- June 2019, I moved away to San Francisco for college. While attending SFSU, I lived independently with roommates. I still had my regular night time nurses with me, but it was the first time that I took sole responsibility for maintaining my own CCHS health. I maintained a happy and healthy balance of school and exams, long nursing rotations, CRU club, sorority life and living a perfectly normal college life. Throughout college, I found that sharing about CCHS with new people was rarely ever a big deal and more of a casual conversation, as most people are either very curious or very amazed. This was all possible because my parents did an amazing job of normalizing CCHS as a child and letting me explore more freedom in activities and raising me without any limitations. In May 2019, I graduated SFSU with a Bachelor’s degree in Nursing and am looking to become a Pediatric nurse!”
“Hey everyone. My name is Joe. I have a 20/27 mutation and sleep with a diaphragmtic pacer and have a cardiac pacemaker implant. I currently live in Middletown, DE still with my family but live as independently as I can. I work in a contract research lab as an Associate Scientist and graduated from the University of Delaware in 2018 with a Bachelors in Chemistry. I enjoy playing games, listening to radio podcasts, and hanging out with friends.
The one thing I always try to tell myself about CCHS is to stay headstrong and never let the downsides of the condition get the best of me. For those that have CCHS like myself, independence is easy, it’s just a matter of figuring out ways to make it work. But most importantly, be safe, and have fun.”
“Hello All! I am Candace, and I am 36 years old. I was diagnosed with CCHS shortly after birth (I was born in December 1982, and received my diagnosis in early 1983).
I currently live in Canada, and when I was born, it was uncommon to have night nurses or any nurses assist with my care. My mom and grandparents learned how to take care of me early on – from changing my trach, hooking up my ventilator, etc. I went home from the hospital at about 15 months of age, and then it was my family’s responsibility to make sure all my equipment was set up properly, that I was breathing properly, and my trach was in place. As I grew, I attended school without nurses, and did almost everything that the other kids in my class did. I did need some physio therapy and occupational therapy in school for fine and gross motor movement issues, but otherwise, I was pretty much like a kid without CCHS. I attended Brownies, Girl Guides, had sleepovers at my grandparent’s place, went swimming, went to movies and pretty much enjoyed life to the fullest.
My doctors started telling my mom that I needed to be responsible for my own care early on – I can’t remember the exact age, but I do remember being able to hook myself up to my machine, know my settings, and making sure my cannulas were clean by about age eleven or twelve. I didn’t change my trach yet, but I needed to be supervised in that area a bit still. I remember going on my first major overnight away from my parents or anyone who really knew about CCHS when I was 18 – I attended a weekend debate tournament in the provincial capital, which was also home to the ventilator supply/repair company. I remember being so excited – I didn’t feel like I had really been held back from life because of CCHS, but at the same time, there was always a worry in the back of everyone’s minds; would I be okay if something happened to my machine? Did I know who to call? The weekend went by without a hitch, and I really enjoyed my independence.
I lived at home while I was in university, but that was because at the time I attended, if your parents made too much money for you to get student loans, it was kind of expected that you would live at home. I worked as a cashier at Walmart on weekends, and attended classes during the week. I moved out on my own in January 2007, at the age of 24. My parents moved to a different province at that time, and I did all right for the time being. I lived on my own from 2007-2009. I moved to Alberta from Saskatchewan in 2009 – I needed better medical care than I was receiving, and had better family support in Alberta. I did live on my own briefly in Calgary, but moved back in with my parents because I was beginning to transition to bi-pap. The transition did not work for me completely, unfortunately, but it was okay – I figure that if I’d lived with a trach for 29 years by that time, then living with a trach was meant to be. Around that time, I also met my husband – Jon and I got engaged, and we married in 2014. By our second trip together (after three months of dating), Jon knew how to set my ventilator up better than I did. He still can hear if something sounds ‘off’ to him with my machine, and will wake me up to let me know.
All in all, independence may seem scary, but it’s really worth it for your CCHS child. You don’t have to do a ton of stuff toward independence right away – just start out small, like letting them turn on their machine, or get them to hook up the tubes to their machine (with supervision). Little by little, your child will become more independent and you’ll look back and be glad you were able to help them find their independence. CCHS doesn’t have to be scary if you don’t allow it to be.”