Valedictorian: Christina Tournant
The following story, Christina’s story, illustrates why research and awareness about Dysautonomia are so important and urgent.
Christina Tournant’s family noticed throughout her childhood that she was wise beyond her years. She was the kind of kid who could solve any problem or conquer any obstacle. In high school, Christina won numerous awards, both for athletics and academics. Full of passion for knowledge, Christina became valedictorian of her high school and enrolled at the Massachusetts Institute of Technology (MIT), in Cambridge, MA. Her time away at school was interrupted as she came home from MIT, fighting a nervous system disorder causing pain and circulatory problems. On a Thursday night, Christina stood high on a parking garage at Tampa International Airport. At 8:17 p. m ., she sent a text message: “I love you, Mom.” At 8:25 p. m ., Christina, 17, was found dead after she jumped from the garage. She had left behind a note written on the back of a photo of herself and her mother that simply said, “Sorry, I couldn’t keep fighting.”
Christina suffered from postural orthostatic tachycardia syndrome, or POTS, a form of Dysautonomia (Dis-auto-NO-mia), which is a disorder of the autonomic nervous system. The illness, which often afflicts young men and women (as well as adults), causes a range of debilitating symptoms, from an increased heart rate to circulation problems and, in Christina’s case, severe pain and digestive problems. The syndrome, whose cause is not well understood, can leave sufferers completely disabled, and many times, without hope. Dysautonomia may be one of the most misdiagnosed medical conditions of all time.
Seven years earlier at the age of 10, Christina could sense there was a change in her health. She began to experience severe gastrointestinal episodes. Although these episodes landed her in the emergency room twice, the doctors, unaware of Dysautonomia, directed her to specialists in gastroenterology and a neurology. These Dr’s ran routine tests but were never able to put the whole picture together, or do anything to assuage Christina’s symptoms. This lack of diagnosis caused such frustration for both Christina and her mother, Tava. There were seven years of either lack of diagnosis or misdiagnosis.
Among those suffering with Dysautonomia, one common diagnosis is stress or psychological problems. In Christina’s case, prior to her Dysautonomia diagnosis, she was diagnosed with irritable bowel syndrome, inflammatory bowel disease, ulcerative colitis, acid reflux, post-concussion syndrome, hypohydrosis, chronic sinusitis, anxiety and ADHD. Put together along with her other unusual neurological symptoms, this is Dysautonomia.
Christina’s mother’s advice is: “If you think your child may have Dysautonomia, read The Dysautonomia Project book, and find a board certified autonomic specialist (which may be difficult since there are very few in the country). If you are able to, travel to a specialist who is an expert in this field. If you are not able to, then absolutely find a doctor who is willing to learn about this and help you through it. Do not accept anything short of this if you want your child to receive the proper care. In addition, once diagnosed, focus on positive online support groups which share information, hope and help, rather than the negative ones.” Answers are on the horizon. Those now suffering whether diagnosed, misdiagnosed, or undiagnosed will be helped.