The Observer Newspapers | Reston Resident Blogs About Her Health to Help Educate Others

June 20, 2008

Reston Resident Blogs About Her Health to Help Educate Others

By Leslie Perales
Observer Staff Writer

Growing up, Reston resident Laurie Yeh had frequent headaches and experienced joint pain in her ankles, knees and hips. She said she often felt intense burning and pins-and-needles sensations in her legs, but doctors always told her the pain was from migraines or growing pains. But when the pain never went away, she said she began to wonder if she was experiencing something more than just bad headaches and growth spurts. Her symptoms were varied and doctors could not provide her with any answers, Yeh said.

For example, when she would stand for long periods, she would feel dizzy and lightheaded, she said. These symptoms would remain even when she sat down again, she said. "I was afraid to go grocery shopping," Yeh said. "I was afraid to go anywhere I would have to stand in line."

About two years ago, the 32-year-old Yeh finally started to get answers to her medical questions. Doctors first diagnosed her with postural tachycardia syndrome, also known as POTS, where blood pools in the limbs and results in increased heart rate, fatigue, visual blurring, weakness, anxiety and mental fogginess.

Shortly after the POTS diagnosis, she had an MRI to try to pinpoint the location or cause of her pain. When the MRI showed a cyst in Yeh's spinal cord, a disorder known as a syringomyelia, her doctors referred her to a neurosurgeon. She was then diagnosed with a Chiari malformation, where her brain protrudes out of the base of her skull.

Soon after, Yeh started to research the condition and learned about the Chiari Institute in New York, a facility that is described as a "comprehensive, multidisciplinary center for the management of patients" with Chiari, according to its Web site. Yeh met with doctors at the institute in April 2007 and learned even more about what had been causing her lifelong pain.

Yeh's Chiari was caused by tethered cord syndrome, which limited movement of Yeh's spinal cord and caused pain in her legs and problems with her kidneys. At the Chiari Institute, Yeh also learned she had Ehlers-Danlos Syndrome, a connective tissue disorder that results in unstable and flexible joints. People with EDS dislocate joints frequently and have stretchy skin that bruises and cuts easily. She said she then learned that EDS had caused the tethered cord syndrome and all of her other medical conditions.

"The base would be that I have Ehlers-Danlos Syndrome," Yeh said. Though she finally had a full diagnosis, many doctors would later tell her they did not know enough about the conditions to treat her properly, she said. "It took about a year and a half to find good doctors that I trust," Yeh said. "I feel like all we do is go to the doctor." She said she now sees a cardiologist, a neurologist and a doctor for pain management, as well as her family physician.

Yeh said her family learned that EDS is a genetic syndrome and her 9-year-old son, Hunter, was diagnosed with EDS in fall 2007. "It hurts me to know that I gave that to him," she said. "It's heartbreaking to know that your child is in pain and is suffering." Since being diagnosed, Hunter has had to stop playing contact sports and other similar activities where he might be easily injured.

A little more than a year ago, Yeh underwent surgery to repair the tethered cord syndrome and she said the surgery reduced some of her symptoms and alleviated some of the pain she had in her legs. Though the prospect of more surgery is frightening, she knows it is necessary, she said. For now, she said, she does what she can to control the symptoms. "We have to make huge lifestyle adjustments to live with these conditions," she said.

One thing that has proven helpful through her journey has been finding information and support on the Internet. As Yeh learned more about Chiari and EDS, she started an online journal to teach her friends and family about what she and her family were dealing with. She said support from her online friends has been wonderful and she has found many people with health issues and frustrations similar to hers.

"People call it the invisible disability," Yeh said. She said people often say she does not look sick, so they do not understand what her life is like. "The pain is part of me," she said. "I've always had it. This is the only life that I have. I can't stop living."

Yeh said she not only hopes to educate others about EDS and Chiari, but also to help people understand that it is not always possible to know how someone feels by how they look. "You never know what people are going through," she said. Visit www.laurieyeh.blogspot.com.