Evie Meg talks about PANS/PANDAS, encephalitis, dystonia, OCD, Bartonella and Lyme Disease
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Evie Meg talks about PANS/PANDAS, encephalitis, dystonia, OCD, Bartonella and Lyme Disease
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Evie Meg is the most well known advocate for immune mediated neuropsychiatric disorders with more than 15 million followers on TikTok (which I worked out is twice as many as Coldplay, people!) and 1m on Instagram. As a child, she was prone to infections - chicken pox and shingles twice, burst eardrums - but healthy enough to thrive as a competitive gymnast.
Aged 14, she developed crippling social anxiety and depression, and that was just the start of it. Tics, Tourettes and OCD followed, and after many years and many doctors, she received a Functional Neurological Disorder diagnosis, and was told her mental health was causing physical problems.
It took a stranger on Instagram in 2020 to point her towards PANS/PANDAS - and with it, the understanding that she needed treatment for the encephalitis driven by immune-mediated inflammation.
Recovery began there, and is still ongoing. She talks about how talking therapy has been helpful for her, losing time and adapting to the life you have, Here, she talks candidly about treatment, life with chronic illness, the particular difficulty of dystonia, glimpses of getting better, and where she finds her joy