One of my friends Sarah Price, disabled Marine, has founded a non-profit for a rare condition she has. I completely support her in her efforts to create awareness of this condition and wish her the best. Her contact information is at the end of the newspaper article below.
Semper Fi Sarah
October 6, 2007 The Index-Journal
Woman with rare condition founds non-profit organization
By St. Claire Donaghy
Index-Journal staff writer
Sarah Price knew something wasn’t right when she began having fainting spells, first at a U.S. Marine Corps promotion ceremony and then later during her daily physical fitness regiments as an enlisted Marine.
“Doctors thought that I was just dehydrated,” Price recalled. “Or they said my symptoms were ‘all in my head’, but it turns out something was physiologically wrong, and it wasn’t all psychological.”
At 20 years-old, with the rank of Lance Cpl., Price said she was diagnosed with a relatively unknown and poorly understood medical condition known as dysautonomia.
Her military identification card shows that she was medically retired from the Marines in April 2006.
Doctors at National Naval Medical Center in Bethesda, MD. and with the National Institutes of Health, also in Bethesda, made the diagnosis of dysautonomia, which means “dysfunction of the autonomic nervous system,” Price said.
The autonomic nervous system controls involuntary functions of the body such as digestion, the beating of the heart, bladder function and operation of glands in the endocrine system. Glands of the endocrine system include the adrenal, parathyroid, pituitary and thyroid, as well as the ovaries, pancreas and testes.
Causes of dysautonomia are varied, including viral infections, autoimmune disorders, neurological disorders, connective tissue disorders, peripheral nerve damage, vagus nerve damage, hypovolemia, genetics, and chemical toxin exposure, Price said.
Price said doctors surmised her dysautonomia was brought on by chemical toxin exposure.
Dr. Mark Haigney, a director of cardiology at the U.S. Naval Medical Center, said chemical toxin exposure is a “best guess,” as to what brought on Price’s dysautonomia. During a telephone interview, Haigney mentioned a possible source as exposure to insecticides.
“With this disease, there could be dozens of underlying causes, and this is as good as an explanation as any,” Haigney said.
“Dysautonomia affects the parts of your autonomic nervous system that are not under your voluntary control. It’s critical that your autonomic nervous system works flawlessly.”
The condition is somewhat rare, Haigney said, pointing out that he sees, “maybe four patients a year,” with some type of dysautonomia.
“One problem with this disease is that many people with it look so darn healthy,” Haigney said. “And, some people with dysautonomia get better over time, but others have symptoms that get progressively worse.”
In addition to Haigney, Dr. David Goldstein with National Institutes of Health also evaluated Price.
Price’s diagnosis was aided by what’s known as a head-up tilt table test, which is commonly used to determine the cause of fainting spells.
Goldstein, who’s over the clinical neurology section of the National Institutes of Neurological Disorders and Stroke, said the tilt table test tilts a patient’s body at different angles while various aspects of the patient are monitored, such as heart rate and blood pressure.
“Most people can tolerate being in an upright standing position for a period of time, but others elicit abnormal bodily responses,” Goldstein said.
“They might have an excessive heart rate or a decreased one.
They might faint, or they might have a drop in blood pressure.”
Dysautonomia, Goldstein said, is an “umbrella term” that encompasses a range of symptoms common to an adversely affected autonomic nervous system.
Price, a 2003 graduate of Ninety Six High School, said she “was relieved” to have a name for what she was going through, which included a litany of symptoms including fainting, abnormal heart rates, digestive problems, pain, numbness and heat intolerance, among other things.
She said doctors diagnosed her with two forms of dysautonomia: postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope (NCS.)
Dr. Haigney said he didn’t doubt Price had a legitimate medical concern when upon first meeting her, she passed out when she stood up to greet him, and her heart rate was registering well above normal ranges, simply from standing up.
“Then, she passed out again while running on a treadmill performing a stress test,” Haigney said. “I knew right away that she had a significant problem.”
However Price said there is no known cure or treatment for her condition, which, at times, necessitates her use of a wheel chair and has rendered her completely bedridden on occasion.
“Treatments are trial and error,” Price said, pointing out what works for some people with dysautonomia might not work for others.
Dr. Haigney said medications have been prescribed to help raise Price’s blood pressure and other have been administered to help her body retain salt.
Haigney commented that Price ahs a “remarkable” attitude, given her circumstances.
“It’s not an unusual thing among Marines for them to have positive outlooks and make lemonade from lemons,” Haigney said.
Outside of medical specialists with backgrounds in autonomic disorders, Price said “very few doctors know this condition even exists.”
But Price is changing that with a nonprofit corporation she’s founded called DREAMS, Inc. DREAMS is short for- Dysautonomia Reaching out for Education Awareness and Moral Support. There’s even a Web site: www.helpdreams.org.
Price filed for the corporation’s nonprofit status with the South Carolina Secretary of State’s Office in September.
Hers is not the only organization dedicated to education people with dysautonomia. Others include National Dysautonomia Research Foundation, Dysautonomia Information Network and Dysautonomia Youth Network of American Inc.
“I didn’t want anybody else to feel alone with this,” Price said, noting she also wants DREAMS to aid in raising research funds for dysautonomia.
Price is organizing an Oct. 27 “cruise-in” open to all area car and motorcycle clubs, with cash prizes, door prizes, and a 50/50 raffle.
She’s also selling DREAMS T-shirts and awareness bracelets to raise money for her cause. The cruise-in starts and ends at Charlie B’s at 2120 Hwy 246 South. Registration begins at 10 a.m. For information, contact Price at 301-830-2280 or 543-3173 or at sarah@helpdreams.org.
