Imagine Having a Disease That Can Rob You of Your Mobility

Nikki Gomez discusses her experiences getting diagnosed and  promoting EDS awareness .

nikkiPublished in The Journal Express   The Zope Gazette

“Imagine having a disease that can rob you of your mobility, your enjoyment of life and, despite all of these things, often goes undiagnosed or misdiagnosed. Ehlers Danlos Syndrome (EDS) is one of those diseases, and 2010 Knoxville High School alumnus Nikki Gomez suffers from it.

“All my joints really hurt,” Gomez said. EDS is a hereditary connective tissue disorder, characterized by joint hyper mobility, skin extensibility and tissue fragility. The defect is in connective tissue. Fragile skin and unstable joints are the result of the protein “collagen,” which acts as the glue for the body.

For Gomez, she spent years going to the doctor with her joint complaints. Many thought she was a hypochondriac. In 2009, Katie Todd referred her to a rhumatologist, who was able to determine that Gomez has EDS.

An estimated 50,000 Americans have EDS, and of those, 90 percent will be undiagnosed or misdiagnosed for years.

“We may be told we are seeking attention or pain medications,” Gomez said. “Parents may hear they are overprotective or may be suspected of child abuse from frequent bruising or dislocations.”

Gomez today lives in North Carolina. Her husband, Army Specialist AJ Gomez, formerly of Bussey, is stationed at Fort Bragg. Whenever she sees a doctor in her new home, she tries to raise awareness of EDS.

“I just want people to know about it,” Gomez said. “It affects your life in a bad way.”

Every day, her spine and knees bother her. Other joints routinely go out of place. Gomez recently became a mother, and her doctors were cautious about her hips’ ability to handle the delivery. In children, there is chronic pain and they easily bruise.

“There’s no cure for it,” Gomez said. “I just try to deal with it day by day.” Medications are available, but Gomez is hopeful she can avoid narcotics. She has been fortunate to not have required splints or surgery.

As EDS is an hereditary disease, Gomez worries every time she hears her son’s bones crack. The condition is more likely to affect females.”

Gomez shared her story to raise awareness of the disease.

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