We are a support and advocacy group for parents who have a child or teen who uses a ventilator full or part time (any type, including NIPPV.) Young adults who are on a vent from a childhood disorder or injury are also welcome to join!
Hi! I'm a young adult with CCHS (Congenital Central Hypoventilation Syndrome.) Normally, you don't have to think about breathing - the autonomic center in your brain tells your body to breathe even when you are asleep. In kids born with CCHS, however, something goes wrong with this center, and they "forget" to breathe, especially while asleep. CCHS used to be called Ondine's Curse (from the German myth about Ondine, a water nymph who curses her unfaithful husband to cease breathing if he should ever fall asleep again.) I have a trach and am on an LTV ventilator 24/7. I also have a J-tube for continuous feeds, and use a wheelchair to help me get around. I take several medications every day, and get weekly SQ IgG infusions of Hizentra. I see a number of specialists (pulmonary, ENT, neurology, and cardiology, etc.) to help keep me healthy, and I also work with some terrific therapists in occupational, physical, and speech therapy.
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