Word: dysautonomia
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...along with his savings. Shep's best friend, toxic pontificator Jackson, spends his waking hours taking mental notes for an anticapitalist manifesto he'll never write, but his real problem is heartbreak over his 16-year-old daughter Flicka, who was born with a fatal genetic disease called familial dysautonomia. Flicka is angry because she is deformed, drooling and dying. (See the top 10 fiction books...
Avigail Eshet is a spirited eight-year-old that Finley helps care for in her spare time. However, this is not your average babysitting job—Avigail was born with severe familial dysautonomia and requires constant supervision to prevent a medical crisis...
...Familial dysautonomia is a rare recessive genetic disorder that results from improper development of the autonomic nervous system. This means that Avigail’s body cannot perform many involuntary nervous responses—such as swallowing, blinking, or turning off adrenaline production if she gets upset—and she does not feel visceral pain. Any time Avigail is distressed, the failure of her nervous system to properly regulate hormones, like adrenaline, puts her at risk for going into a life-threatening dysautonomic crisis...
Tasteless Tipoff. Dysautonomia was not recognized as a separate disease entity until 1949, when Dr. Conrad M. Riley described several New York City victims and it was hard to distinguish from other inherited defects. Then, at New York University Medical Center, Dr. Joseph Dancis and Dr. Alfred Smith found that dysautonomia had one unique feature: its victims lacked taste buds in the front and, in most cases, in the back of the tongue as well. This defect in taste buds signals defects in other parts of the nervous system...
...that the death rate mounts steadily; the oldest patient on record is 36. The usual cause of death is the very problem that the infant encounters at first feeding: inhalation of food into the lungs, causing pneumonia, often coupled with heart failure. So far, the best palliative treatment for dysautonomia consists of using tranquilizers to help control the intense vomiting that characterizes the disorder. There is no cure...