“It was basically confusion and shock, like ‘What is this?’” Crystal Bedoya recalled.
While it can sometimes be exhausting and painful to live with multiple sclerosis, Crystal Bedoya tries to enjoy life as much as she can. Prior to the pandemic she and her sister enjoyed traveling and have visited Brazil and several European countries.As then 11-year-old Crystal Bedoya walked home with her sister, Catherine, she felt her body become numb. She hoped that she would improve, but her health only worsened.
“That was very scary — mostly for my mom because she would have to observe me do it correctly. But she couldn’t do it because she deals with tremors,” Bedoya said. “MS comes with tremors too so both of us were trying not to freak each other out trying to get me the medication.”“I was trying to figure out my life, like who I was, and it was quite scary,” she said.
Living with MS for so long means that Bedoya has been on a lot of treatments. She normally takes a medication for as long as it manages her symptoms or stops lesions from forming on the brain. These lesions can cause more permanent damage and more symptoms. Right now she’s on an infusion, which she thinks helps her a great deal.
“It feels nice to feel some stability because my MS has been very aggressive, very unpredictable. It’s exhausting” she said. “I always think to myself, ‘Will I be able to move today. Will my body work?’”“Multiple sclerosis is a chronic immune mediated process where the immune system attacks the covering around the nerve cells that make up the central nervous system,” Dr. Kalina Sanders, a neurologist at Baptist Health in Jacksonville, Florida, told TODAY.
“Disease modifying therapies have proven to prevent relapses, have been proven to decrease the number of lesions that are occurring,” she said. “And do have an impact on disability progression over time.”Black, African American and Latino people are often diagnosed later because symptoms might look different in these populations or they may have less access to experts who recognize multiple sclerosis.
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