Lauren Mathews’ family believed her, and that’s what scared them.
Mathews, 15, was unexpectedly bed-ridden April 17, 2012. She slept for 12 to 17 hours at a time and was overcome by dizziness when she stood and tachycardia when she worked out.
Doctors couldn’t explain her fatigue, and some suggested to her parents that it was a psychological disorder.
“The worst was not knowing what I had, because when doctors don’t really know you assume the worst and think of the worst,” Mathews said.
She’s handling postural orthostatic tachycardia syndrome, a form of dysautonomia, better now. She’s missed only three days of school as a State College Area High School freshman, as opposed to having missed all of seventh and much of eighth grades dealing with the disability.
October is Dysautonomia Awareness Month. Dysautonomia is an umbrella term for several different medical conditions that cause a malfunction of the autonomic nervous system, according to Dysautonomia International. More than 70 million people worldwide live with a form of the illness.
Mathews, of Lemont, has learned that, with her condition, drinking 64 ounces of water a day is a necessity, not a suggestion. She has learned that, even though she dislikes salt, she has to eat at least 7 grams a day to increase her blood volume. And she has learned that she has to wear compression stockings to increase her blood circulation.
She must do every one to function as normally as possible.
Her road to diagnosis with POTS, however, was disheartening.
Mathews’ parents, Jonathan and Myrta, took her to specialists in different fields in states from Ohio to Florida.
Doctors didn’t have a diagnosis for her symptoms, so some suggested she was making it up to get out of school. Others said it was psychological.
“I knew she was sick,” Myrta Mathews said. “I could see she couldn’t get out of bed. I could see she was always pale in the face. And she likes school. She’s a very studious person. It was frustrating, because I couldn’t do anything.”
Thomas Dispenza, a cardiologist at Penn State Hershey Medical Center, diagnosed POTS in May 2012.
“We’re lucky,” Jonathan Mathews said. “We got a diagnosis earlier than most people with this condition.”
Penn State Hershey Medical Center pediatric rheumatologist Barbara Ostrov said diagnosing POTS is difficult because its symptoms are vague.
She also said dealing with it is a challenge.
“It can be disabling for some people for a long time,” Ostrov said. “It’s not just a pill that does the trick. Part of treatment is relying on the family.”
“In Lauren’s situation, she needed to correct her sleep disturbance and exercise more,” she said. “Sleeping properly is part of overall health, and she slept too much. With kids it’s common they can stay in bed for 12 to 18 hours. They sleep too much and lose muscle, and you need that to pump blood properly.”
Lauren Mathews was bed-ridden until doctors prescribed Midodrine, which treats low blood pressure, about a year after her diagnosis.
The medicine, combined with a proper diet, adjusted sleep schedule and light exercise, allowed her to return to school.
The condition, however, has no cure, so she may not be able to return to activities she enjoys, such as running and playing soccer.
She still doesn’t attend full school days because she is on a special educational plan — linked to the Americans with Disabilities Act — to take the classes she needs in ninth grade. Her school day begins about an hour later than other students.
She said it’s better than staying at home.
“A lot of people thought it was cool I didn’t go to school, and occasionally people asked if I was skipping school,” she said. “It wasn’t fun because I missed out on a lot. I didn’t get to see friends as much, so I’m really happy to be back all the time.”
Shawn Annarelli can be reached at 235-3928. Follow him on Twitter @Shawn_Annarelli.