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The critical role of research volunteers

Posted by on Tuesday, July 18, 2023 in Related Content, Summer 2023 .

In 1998, Melissa Sparks, a 35-year-old single mother of two young daughters from rural Dickson County, Tennessee, developed a headache so excruciating it dropped her to her knees.

Her mother rushed her to the nearest hospital, but by the time they arrived, Sparks was unconscious. When she awoke, she couldn’t remember what day it was. She couldn’t count the money in her purse. A college graduate, she struggled even to read and write beyond a sixth-grade level.

Eight years earlier, Sparks had been diagnosed with systemic lupus erythematosus, an autoimmune disease that attacks tissues throughout the body. Lupus is notoriously difficult to diagnose; at the time, doctors knew even less about its impact on the brain. “They had no idea what happened to me,” she said.

Sparks spent the next two years relearning basic skills, including four months of intensive outpatient speech and language therapy at the Vanderbilt Bill Wilkerson Center. No longer able to work, she had to give up her home, and she and the girls moved in with her parents.

Fast-forward 24 years, and Sparks came across an online notice seeking subjects for a clinical trial to test whether memantine, a drug approved for the treatment of Alzheimer’s disease, also may relieve the “brain fog” experienced by many patients with lupus.

“I didn’t know they could do anything for my memory,” said Sparks, who has continued to experience cognitive impairment and short-term memory problems. When invited to join the study and take a chance that her symptoms might improve, she did not hesitate. “I was all on board,” she said.

Sparks has since completed the clinical trial and is taking memantine under the supervision of her physician. So far, the results have been less than spectacular. “I don’t think it’s ever going to be that great for me,” she said. “I think I will always have some short-term memory problems.”

But that doesn’t mean she feels her contributions to clinical research were for naught. On the contrary, more research is urgently needed. For one thing, there are only two drugs on the market approved for the specific treatment of lupus symptoms.

“We don’t have a lot of options,” Sparks said. “I’m all about finding something that is going to help someone behind me.”