Two years ago, Dr. Sevda Sarikaya’s 14-year-old daughter was a bright, accomplished art student who excelled at classical piano. She enjoyed spending time with her friends and dreamed of becoming a neuroscientist one day.
Everything changed when the girl — whose name is being withheld to ensure privacy — developed COVID for the second time. The illness lingered. The family sought treatment, but nothing helped. “Things kept getting worse, and no one seemed to understand what was happening,” Dr. Sarikaya said. “It felt like we were about to lose her.”
Dr. Sarikaya’s 25 years of experience as a neurologist, coupled with her husband’s expertise as a neuroradiologist, informed their decision to take their daughter overseas for treatment. The girl survived, and the family returned home to Seattle. But over the following months, their daughter continued to struggle, developing an array of symptoms, including severe pain, insomnia, migraines, abdominal cramps, and epileptic seizures.
Today, at 16, she has difficulty sitting up and cannot stand without passing out. She also has gastroparesis, a debilitating condition that affects digestion, causing her to lose 30 pounds at one point. She is sensitive to noise and light and cannot tolerate many foods. She is unable to go to school.
Dr. Sarikaya has shifted her focus away from her medical practice to care for her daughter full-time. It hasn’t been easy for her or her husband. “The exhaustion we feel is indescribable,” she said.
Today her daughter is under the care of a specialist who has diagnosed her with a series of COVID-induced autoimmune disorders. “We’re in uncharted territory but hoping for the best,” Dr. Sarikaya said.
Despite the challenges, she remains determined to help her daughter and others who are suffering from COVID-associated conditions. Every day, she spends time following studies, checking medical journals, and connecting with other families. “I think pediatric Long COVID is far more common than people realize,” she said. “We need to start by educating physicians to prevent patients from being dismissed and to ensure they can access safe, effective medications that could at least help alleviate their symptoms.”
Dr. Sarikaya joined the FNIH’s RECOVER-TLC program in January as part of a working group that reviews agents submitted by the public. “I feel truly honored to be part of this group,” Dr. Sarikaya said. “I’m deeply grateful for the thoughtful and collaborative approach they are taking because, with these conditions, we all feel like we’re working blindfolded.”