Congenital Central Hypoventilation Syndrome

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Congenital Central Hypoventilation Syndrome
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    JT_77

    Virtual meets with friends sharing same disability

    Hello Everyone,

    My name is Jay Trivedi and I am 30.0.0.5 year old individual diagnosed with CCHS (congenital central hypoventilation syndrome). Also I am an member and advocate of CCHS Family Network and contributor to CCHS Foundation.

    Joining CCHS Family Network has given me the strength and confidence to have everyday conversations with those who share the EXACT same disability. Those conversations could be about anything whether it be about movies, tv shows, school, etc. Because of the network, I am very happy to call those families my brother or sister because I am an only child in my family. I do not have any siblings in my family or girlfriend. Living with disability as an only child has been difficult. But the network has really changed that perspective.

    Each day, I am blessed to be having virtual conversations.

    Community Voices
    JT_77
    Mariah Hillis

    Woman With Hypoventilation Responds to 'Grey's Anatomy' Episode

    I’ve always been a die hard “Grey’s Anatomy” fan and have watched it religiously for years. This week I sat down and started the show and prepared for an hour of drama, tears, and escape. This episode follows the team of doctors as they try to save a John Doe who was in a terrible car wreck. They are all fighting about how to treat his injuries. Throughout the show, each doctor is confronted with a moment or person from their past that becomes intertwined with the plot of the accident victim. At one point the resident in the room, Stephanie Edwards (Jerrika Hinton), realizes what is actually wrong with their patient. He has been bleeding uncontrollably for hours and no one could figure out why. Edwards is then confronted by a younger version of herself wearing pajamas and pushing an IV pole from her days as a kid constantly in the hospital from having sickle cell anemia. Young Edwards starts to speak saying she remembers reading about a blood condition that causes this type of bleeding. When Dr. Owen Hunt asks present-day Edwards how she knew about the disease, young Edwards speaks up, saying, “When you spend your childhood in a bed, you become obsessed with the thing that put you there.” After hearing that, I was suddenly back in the ICU as a young kid, learning as much as I could about how my lungs worked and why I was the way I was. Later I became obsessed with genetics. I needed to know precisely how recessive genes were passed on and how mutations on chromosomes were made. I read and read, learning as much as I could, wondering how I became me. I learned about alleles and why they are so important to genetics. I learned about bronchial tubes. I would amaze my classmates for why I knew so much about one organ. I spent my childhood in a bed, and I became obsessed with the thing that put me there. We want to hear your story. Become a Mighty contributor here .

    Mariah Hillis

    6 Things I Wish People Understood About Growing Up With a Trach

    I had a high spinal cord injury while I was being born, which affected two parts of my brain: the automatic nervous system and the part of my brain that controls the physical parts of my body. As a result, I don’t breathe in my sleep and require a tracheostomy and a ventilator to keep me breathing in my sleep. If I don’t have it on while I sleep and get into a deep sleep, my carbon dioxide could skyrocket, my oxygen could bottom out and I could die. It sounds awful and sad, but hey, I’m used to it. Having a trach, a G-tube and a bit of a physical disability my whole life, there were things I wish people knew about what it was like to be me. 1. Having a trach makes me stick out in a crowd. I grew up in a smaller city in Canada named Saskatoon. When I was born, it wasn’t nearly as big as it is now, so everyone — and I do mean everyone — knew when the girl who couldn’t breathe was born. To this day, people who were my nurses while I was in the PICU and people I went to elementary school with recognize me. Having a trach makes me stick out in a crowd. I’ve always been outgoing, so that never bothered me. 2. I’m not sick by choice. I’m not bailing on plans, and I’m not skipping class. When I get sick, all hell breaks loose, and I’m tethered to my ventilator, unable to leave except to go to the bathroom. 3. I spend a lot of time in the hospital as a result of having a trach. My immune system is fine; it’s just that having a trach gives easy access to my lungs. One time I was in the ER when a cold got out of control and antibiotics were needed stat. When the doctor walked in, the first thing I said was, “Why is your ID badge from Edmonton?” I had oxygen up my nose and they were taking my blood and I felt like crap, and yet those were the first words out of my mouth. He just smiled and said, “Wow, you spend a lot of time in the hospital, don’t you?” I’d never felt heard or believed until that moment, and it stuck with me all these years later. As a person who always deals with doctors and medical personnel, I never feel heard. When I do, it’s so special, and I wish people understood that. 4. My normal is different than everyone else’s normal. My life is not school, work, home and repeat. It’s “live as much as you can before you end up in the ICU again.” Don’t go grocery shopping, order more suction catheters and argue with the women holding them hostage. Don’t do laundry; go get more gauzes to keep your G-tube leakage at bay. Then do laundry. 5. Questions are appreciated, and I want to educate people — but don’t stare. I want people to know that breathing may be hard for me, but I can have a life as well. I once was at a French program and I was there for two days before a boy asked me what my trach was. The funny part was that we weren’t allowed to speak English, so he said, “Qu’est-ce…” then he rubbed his neck where my trach was. I laughed and grinned, then explained what it was and why it was there. It was so much nicer then him staring. 6. I’m a person, too. The important thing I want people to understand is that I’m a person too. I have dreams, I have plans and I have friends. It might be harder to reach my goals, which only makes me more determined to do it. When there are more odds stacked against someone, chances are they are going to be the most stubborn person you ever met. This is my life. Don’t mock it or make me feel any less of a person — just help me if I need it. And don’t stare. It’s not polite.

    Mariah Hillis

    When an 8-Year-Old With at the Hospital Reminded Me I'm Not Alone

    I was hospitalized not that long ago for another one of my famous chest infections. I was super down about everything because this was right before my final exams, and I had papers up to my eyes. One day I took a walk around the hospital. I thought nothing too interesting was going to happen. But then, a little boy in cafeteria asked what the thing in my neck was. (I don’t breath in my sleep, so I have a tracheostomy to assist with that issue.) I heard this and went over and asked him if he wanted to know, and he said yes. I gave him the quick and easy version of what’s wrong with me. At first glance I thought he had cancer. But he had cystic fibrosis. He was only 8 years old and had a chest infection hitting him as hard as mine was hitting me. We hit it off immediately. I still firmly believe he was just impressed that he met someone else whose lungs were not behaving properly. We talked a lot about things that only people who have been sick their whole lives would understand. Hospitals, IV lines, doctors and the Children’s Wish Foundation. Our attempts at being normal were obvious. I’m a second-year university student who’s unable to move out of her parents’ house. I have more medical equipment than clothing. He’s only 8, so there’s a good chance that he doesn’t even know his life isn’t normal. At one point he asked me if I was on pediatric floor like he was, and I told him no. When I told him I was on the sixth floor, his eyes got ridiculously large. He said, in all seriousness, “Is it scary up there?” I was laughing so hard. I had to pull myself together and say, “No, it’s just grandpas up there.” Sometimes being lifted up comes in the strangest forms and in the most unlikely places. To someone who is different, being reminded they’re aren’t alone is everything. That one similarity, that one thing the two of you have experienced that no one else has, can bring you closer then you ever thought possible. That was the case, at least, for a 20 year old with congenital central hypoventilation syndrome (CCHS) and an 8-year-old with cystic fibrosis. Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .