The Encephalitis Podcast

In this episode of The Encephalitis Podcast, Prav Prathapan speaks with Dr Melissa Wright, a paediatric autoimmune neurologist at the University of Utah and Director of the Paediatric Autoimmune Neurology and Neuroimmunology Program at Primary Children’s Hospital, about clinical trials in paediatric autoimmune encephalitis.

Dr Wright explains why clinical trials are so important for children with autoimmune encephalitis, how treatment decisions are currently made when evidence is limited, and why children are not simply “little adults” when it comes to research, medication, recovery and long-term outcomes.

The conversation also explores common concerns families may have about clinical trials, including placebo use, safety safeguards, trust between clinicians and families, and the importance of building a supportive research community for rare conditions.

This episode is especially relevant to our children’s appeal, through which we are trying to raise £30,000 by July 2026 to support vital work for children and families affected by encephalitis. https://www.justgiving.com/campaign/encephalitischildrensappeal2026

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate

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Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational

As part of Volunteer Week, we’re sharing the powerful story of Evie, who developed autoimmune anti-NMDAR encephalitis at just 19 years old.

What began with flu-like symptoms quickly became seizures, hallucinations, psychosis, memory loss, and months in hospital. In this deeply honest conversation, Evie opens up about surviving encephalitis as a teenager, losing her sense of identity, struggling to return to work and normal life, and the emotional impact the illness had on her relationships and mental health.

Now a volunteer with Encephalitis International, Evie supports other survivors and families through our online peer support groups - helping people realise they are not alone.

This episode navigates through recovery, identity, isolation, and life after brain injury.

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate

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Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational

In this episode, Prav speaks with Hina about her son Dian’s journey with autoimmune encephalitis and the challenges of returning to school after a life-changing diagnosis.

After Dian began experiencing seizures at just seven years old, Hina and her family faced a long and emotional journey through hospital testing, uncertainty, memory difficulties, and major changes in daily life and more recently his transition up to a new school.

Hina reflects back on the past 5 years and shares how encephalitis affected Dian’s learning, confidence, friendships, and family dynamics and how communication, persistence, counselling, and school support helped them move forward. 

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate

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Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational

The Encephalitis Podcast Ep 70

In this special episode of the Encephalitis Podcast for World Immunization Week, we spotlight West Nile encephalitis through the powerful short film Unconquered: Battling Back After West Nile Virus.

Host Prav is joined by Tom, a West Nile encephalitis survivor, and Shawn, filmmaker and CEO of SES Productions, who brought Tom’s story to life on screen.

Tom shares his journey from sudden severe illness and hospitalization in 2024, through weeks of rehabilitation, to his ongoing recovery marked by determination, physical therapy, and personal goals. His story highlights the long-term neurological impact of the disease and the slow, non-linear path to regaining strength and mobility.

Shawn discusses how a chance connection led him to Tom’s story, and why he felt compelled to document it. Drawing on his background in journalism, he explains the importance of human storytelling in raising awareness, balancing science with personal narrative, and sparking conversations about prevention, early diagnosis, and the urgent need for a human vaccine.

This episode was filmed as part of World Immunization Week April 2026

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate
#EncephalitisAwareness #BrainDisorder #EncephalitisSociety
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Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational

The Encephalitis Podcast Ep 69

In this episode of the Encephalitis Podcast, Prav speaks with Bill, an endurance athlete who shares his powerful journey through tick-borne encephalitis (TBE). From competing in swimrun events across Nordic countries to facing severe neurological symptoms and a long recovery, Bill’s story highlights how unexpected and serious this virus can be.

As part of World Immunization Week, this conversation sheds light on the risks of TBE, the challenges of recovery, and the importance of vaccination for those traveling to or active in endemic regions. Bill also offers honest insights into life after encephalitis and practical advice for others affected.

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate
#EncephalitisAwareness #BrainDisorder #EncephalitisSociety
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Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational

The Encephalitis Podcast Ep 68

In this episode, we explore why completing your full vaccination schedule is essential for protecting against encephalitis. 

Prav is joined by Professor Lance Turtle, an expert in infectious diseases, who explains how vaccines work, why multiple doses matter, and the risks of stopping after just one shot. Learn how vaccines not only protect individuals but also help reduce the global burden of serious brain infections.

This episode was filmed as part of World Immunization Week April 2026

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate
#EncephalitisAwareness #BrainDisorder #EncephalitisSociety
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Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational

Ep 67 - In this episode of the Encephalitis Podcast, Prav speaks with Professor Tom Solomon CBE, a leading neurologist and infectious disease expert, about the groundbreaking DexEnceph study - two decades in the making.

Discover how this UK-wide clinical trial explored whether dexamethasone (a corticosteroid used to treat various inflammatory conditions) could improve outcomes in herpes simplex virus (HSV) encephalitis, the challenges of running long-term research, and the powerful role patients and families play in advancing medical science.

Professor Solomon CBE shares insights from the study’s findings, including why early treatment may matter, how the results could influence future care, and what it truly takes to see a complex clinical trial through to completion.

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate
#EncephalitisAwareness #BrainDisorder #EncephalitisSociety
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Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational

In this episode of the Encephalitis Podcast, Prav speaks with neurologist Dr. Aline Matos about the development of global training modules designed to help clinicians diagnose and treat encephalitis -especially in low-resource settings.

They explore why encephalitis is often missed or misdiagnosed, the life-changing consequences of delayed diagnosis, and how these practical modules empower clinicians to act even with limited tools.

Dr Matos says 'Encephalitis does not end when the acute phase ends. The long-term sequelae, cognitive behaviour, social are often invisible but deeply impactful. So improving and saving lives care is not only about saving lives, as we said earlier, it is about preserving lives.'

The global training modules can be viewed on the BMJ website here https://new-learning.bmj.com/collection/30000415

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate
#EncephalitisAwareness #BrainDisorder #EncephalitisSociety
---------------------------------------------------------------------------------------------------------------------------

Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational

What is MOG antibody-associated encephalitis, and how does it differ from other types of autoimmune brain inflammation?

In this episode of The Encephalitis Podcast, Prav speaks with Dr. Matteo Gastaldi, neurologist and Head of the Neuroimmunology Research Unit in Pavia, Italy. Together, they explore MOG antibody-associated disease (MOGAD), including how it presents in children and adults, symptoms to watch for, how it can mimic viral encephalitis, and current treatment approaches.

Dr. Gastaldi also discusses relapse risk, long-term treatment decisions, the challenges of antibody testing, and exciting developments in ongoing clinical trials. This episode offers hope and clarity for patients, families, and clinicians navigating this complex and evolving condition.

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate
#EncephalitisAwareness #BrainDisorder #EncephalitisSociety
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Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational

The Encephalitis Podcast Ep 63

In this episode, Prav is joined by Dr. Freddie Byrne, clinical psychologist and Clinical Director of Living with ABI Limited. 

Together they explore the realities of parenting after encephalitis and acquired brain injury (ABI), including changes in family roles, the impact on children’s well-being, trauma, and post-injury growth. Drawing on over a decade of experience, Dr. Byrne shares practical insights into supporting families, improving communication, and keeping children’s needs at the center of recovery. 

An essential conversation for parents, families, and professionals affected by encephalitis and ABI.

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If you have been affected by encephalitis and are in need of some support, please visit https://www.encephalitis.info/support 

If you would like to stay up to date with our news and events please sign up to our mailing list here: https://www.encephalitis.info/keep-in-touch 

Support our work providing help and assistance to families affected by encephalitis by visiting: https://www.encephalitis.info/donate

-------------------------------------------------------------------------------------------------------------------------------

Follow Encephalitis International:

📢 Facebook: https://www.facebook.com/EncephalitisInternational

📢 Instagram: https://www.instagram.com/encephalitisinternational 

📢 LinkedIn: https://uk.linkedin.com/company/encephalitisinternational