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FeaturesFeb/Mar 2011 Issue

Gluten Attack: Ataxia

Battle for Health

“Every day is a fight with gluten ataxia,” says Bosse. “You have to constantly fight to get better.” In Bosse’s case, she also has to fight against occasional bitterness. She can’t help wondering, what if her celiac disease and gluten ataxia had been diagnosed promptly? When her mood droops, she turns to her music and her faith.

She also takes pride in finding creative solutions to the challenges presented by her ataxia. She’s arranged the furniture in her apartment so she can negotiate corners more easily and quickly stabilize herself, if necessary. Given the lapses in her short-term memory, she knows that good organization and a regular schedule are essential. She takes advantage of technology, wearing a watch synched with her computer that reminds her of appointments or that water is boiling on the stove. Her computer works with voice commands so that she doesn’t have to type by hand, a big help with the new job.

“I’m doing everything I possibly can to improve my quality of life,” she says, adding that an even bigger goal is to improve the lives of others with disabilities. She’s currently an active member of an online support group where she offers problem-solving ideas for others suffering from ataxia. She also ministers to those with disabilities at her church.

“If I hadn’t struggled with gluten ataxia, I wouldn’t have the empathy to really care for others,” she says, renewed by her outreach. “I’ve learned that in every life experience, no matter how difficult, there’s hope and joy.”

Medical writer Christine Boyd lives in Baltimore.

 

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