C C H S NETWORK INC
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Mission Statement
Building Community, Empowering Patients, Championing Research The CCHS Network has a multi-focused mission of education and support of our families and CCHS patients, inter-family and family-physician communication, and supporting and facilitating CCHS research.
About This Cause
CCHS Network is a patient advocacy organization for those living with Congenital Central Hypoventilation Syndrome (CCHS). CCHS is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired. A CCHS patient’s respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is sluggish during awake hours and absent to varying degrees during sleep, serious illness, and/or stress. Can you imagine having to be hooked up to a machine whenever you doze on the couch, snooze on a car ride, or nap in the sunshine? Can you imagine living with a device protruding from your neck for everyone to see? And never being able to join in pool parties or even learn to swim because of your tracheostomy? Or getting leads implanted in your chest to electronically force you to breathe? For children and adults with CCHS, one of the rarest disorders in the world, survival means being tethered for life to mechanical ventilation. It means coping with afflictions of the heart and other organs that are damaged by the same gene mutation. The CCHS Network is the largest and oldest nonprofit organization for CCHS is the world. We envision a day where CCHS is no longer a life-threatening diagnosis.