Local woman battles rare disorder head-on
Even at 23, Emily Jordan Boyd wears several different hats — wife, mother, assistant teacher and college student.
Now, the young Thomasville woman has added another hat to her list — advocate.
Boyd wants to raise awareness of intracranial hypertension, a rare disorder in which the pressure of the cerebrospinal fluid in the skull is too high.
“Nobody knows about this disease,” Boyd explains. “I started a Facebook page just to raise awareness, and it’s gotten more than 400 likes in less than two weeks. I also made up some brochures that I’ve been taking to different restaurants to make more people aware of this disease.”
Boyd was diagnosed with intracranial hypertension earlier this year, after experiencing some of the worst headaches she’s ever had.
“I’ve always had chronic migraines,” she says, “but these headaches were horrible. My head felt like a balloon that you could pop with a pin.”
She now knows that was a result of the increased pressure of the cerebrospinal fluid in her skull, and she can thank her eye doctor for helping her get the diagnosis. During an exam for pinkeye, which she’d contracted from her young son, Ayden, the eye doctor noticed how inflamed her optic nerves were, so he sent her for a CT scan to find out what was causing the inflammation. That scan, followed by a spinal tap ordered by a neurologist, led to the diagnosis.
“What the spinal tap was measuring was how much fluid I had up around my brain,” Boyd says. “It was way high.”
The fluid was drained to a normal level, but the pressure became elevated again within a matter of months, to the point that she began blacking out repeatedly. That was in August, and she’s had three major surgeries since then to address the pressure of the fluid in her skull.
In the meantime, she had to put her education on hold — she’s a student at Guilford College — as well as her assistant teaching position at Walkertown Elementary School. She hopes to return to school and work in January if she gets clearance from her doctor.
There is no cure for intracranial hypertension, but the chronic form of the disease can be treated with drugs and surgery, according to the Intracranial Hypertension Research Foundation, a nonprofit organization devoted to supporting the medical research of chronic intracranial hypertension.
According to the foundation, the incidence of chronic idiopathic intracranial hypertension — the form of the disease that Boyd has — is approximately one in 100,000 for the general population.
The disease obviously made 2013 a tough year for Boyd, but she’s tried to face her challenges with a positive attitude, she says. Following her first surgery in October, she got a tattoo on her back that features the word “Fearless,” with a pair of blue and green boxing gloves dangling from the lettering.
“The colors being blue and green because that’s our awareness colors, and ‘fearless’ saying I can get through anything,” Boyd explains.
She and her family are organizing a fundraising walk to be held in September, and the Facebook page Boyd created is another way she has tried to be proactive, she says. It has attracted intracranial hypertension patients and supporters from around the world, she says.
“This is a horrible disease,” Boyd says, “and I just want this Facebook page to make people more aware, and to offer support to people with the disease.”
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For more information about intracranial hypertension, visit the Intracranial Hypertension Research Foundation’s website at www.ihrfoundation.org.
You can also visit Emily Jordan Boyd’s Facebook page at www.facebook.com/pages/Intracranial-HypertensionPTC-awareness/470640249711534.
For further information about the Facebook page or about Boyd’s fundraising walk in September, contact her directly at (336) 848-1301 or email@example.com.