Today's post from masslive.com (see link below) has no personal link to HIV but shows how devastating a random virus can be when it attacks the nervous system. The case in point here, contracted an unidentified virus which caused her autonomic nervous system (all those involuntary functions we take for granted, like digestion, breathing, blood pressure etc) to fail on several fronts. The general term for this sort of nerve damage is dysautonomia. It sounds like a disease in itself but is actually an umbrella term for this sort of condition, in the same way that neuropathy is a general term for nerve damage.This story shows how alarming it can be, especially when there's no way of knowing how far the disease will progress and what the prognosis will be.
By Kathryn Roy | Special to The Republican on July 16, 2014
Emily Hespeth, a 16-year-old Monson resident, contracted a virus that has caused her autonomic nervous system to malfunction, and interferes with ability to eat.
MONSON -- Sixteen-year-old Emily Hedspeth was a healthy girl, just starting her sophomore year at Monson High School, when she began to show symptoms of an infection. That infection, which hit in September 2012, later resulted in a diagnosis of dysautonomia, an umbrella term for conditions that cause the body's autonomic nervous system to malfunction. The system controls such functions as heart rate, blood pressure and digestion.
Today, Hedspeth needs a feeding tube and struggles with various health problems. Her mother, Mary Hedspeth, is working to raise awareness about dysautonomia,.and its various forms. Emily suffers from Postural Orthostatic Tachycardia Syndrome (POTS), which causes an abnormal heart rate upon standing. There is currently no known cure for dysautonomia.
Hedspeth said doctors were baffled initially because it all started with what appeared to be an everyday virus.
“She had a fever, body aches, a headache, nausea, a sore throat, and she was very lethargic,” Hedspeth said.
More common ailments such as mononucleosis were ruled out. Although doctors never determined specifically which virus Emily contracted, they later determined that it had damaged her autonomic nervous system, her mother said.
“As a consequence of this, Emily also has gastroparesis, in which the nerves in charge of the stomach don’t work,” Hedspeth said. “She has a hard time eating and even maintaining her weight.”
Emily has a feeding tube coming out of one nostril, and she has had a temporary gastric stimulator out of the other nostril. She traveled to Louisville, Kentucky to have a permanent gastric stimulator put in in late June by the doctor who invented the device, to help her stomach function properly. Hedspeth compares it to a cardiac pacemaker, but for the stomach. It's too early to tell how the device will impact her quality of life.
But Hedspeth said Emily has suffered for a long time.
“Whatever she eats, she gets nauseous,” Hedspeth said. “She takes two bites of something and she’s full. She has terrible bloating. Sometimes her belly is so just so bloated, she looks pregnant.”
Hedspeth said her daughter has seen numerous doctors.
“Plenty of them thought she was anorexic,” she said. “Sometimes the doctors don’t listen to you, but I didn’t give up till somebody did.”
POTS causes Emily’s heart rate to change rapidly.
“Lying down, it’s 50 (beats per minute),” Hedspeth said. “When she sits up, it’s 80, and when she stands it’s between 120 and 130. She gets very dizzy and she almost passes out.”
Emily’s condition has forced her to miss out on school and other activities. She attempted to attend two classes at school this year.
“She had to go for Spanish,” her mother said. “She tried to do Spanish and English. She made it to Spanish, but every day is a battle for the poor kid.”
Emily is currently being treated by physicians at Massachusetts General Hospital, who are involved in a dysautonomia research study. She said researchers at Vanderbilt University are also studying the condition, and recently discovered that those affected by it have an unique aspect to their blood.
“Dysautonomia International (an advocacy group) is trying to raise awareness and money to help fund the next part of the research, so they can come up with a blood test which could be run by any pediatrician in the country,” Hedspeth said. “A lot of doctors don’t even know what (dysautonomia) is.”
Hedspeth said for now, it’s all about managing Emily’s symptoms. It’s not clear what the long-term prognosis is.
“They don’t really know how bad it’s going to get,” she said. “I don’t really want to think about it.”
For more information on dysautonomia, visit http://www.dysautonomiainternational.org./welcome.php
http://www.masslive.com/living/index.ssf/2014/07/monson_mom_raises_awareness_of_autonomic_nervous_system_disorder.html#incart_pop_thishour
