Episode 18 - Growing Up With Long COVID: A Childhood Interrupted

In this episode of the COVID Longhaulers Podcast, Jessie and Emerson sit down with Darya, a 16 yr old junior in high school from Los Angeles, and her mom, Dr. Elham Raker. Darya has been living with Long COVID since 2021, when she developed intractable migraines after a covid infection at just 12 years old. Elham is a pediatrician and most importantly a mom, who has been navigating a  system that is not equipped for kids with Long COVID alongside Darya. Darya shares what it’s like to grow up with Long COVID: debilitating migraines, fatigue, brain fog, POTS, and the heartbreak of reinfection after hard-won progress. Darya was making huge strides in recovery after her initial infection, only to have her progress seemingly reset by another COVID infection. Together, she and Elham speak openly about school, friendships, identity, and the toll that this type of chronic illness takes during adolescence.Elham offers a powerful and unflinching perspective on the gaps in pediatric Long COVID care – from dismissive clinics and medical gaslighting, to the unwillingness to try off-label or experimental treatments, and the lack of meaningful research for kids and teens. She explains why “doing no harm” is causing real harm, and how parents are often forced to become their kids' case manager and advocate. You can read an article that she wrote about this issue here. Children and their families are often left to navigate Long COVID care on their own, with little support from the medical system. Please consider supporting organizations working to change that reality: Long COVID Kids (UK) and Long COVID Families (US) support children, adolescents and their families by connecting families with clinicians and researchers, raising awareness, and pushing for better research, clinical care, and policy protections. If you enjoyed this episode, please subscribe so you don’t miss future episodes of the COVID Longhaulers Podcast.A written version of this episode and the full transcript are available on our Substack, along with a glossary to help explain commonly used terms.You can also join our Discord server to connect with the community, and find all of our other links here. Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team.