Encephalitis is a condition that many people know little about, yet its impact can be life-changing for those affected and their families. We sat down with our National Sales Manager, Rhys Thorne, to hear his personal experience of encephalitis, as his brother has been living with the long-term effects of the condition since 2019. In this conversation, he shares the challenges his brother has faced, how it has affected their family and why raising awareness through campaigns like #RED4WED is so important.

Question: Can you tell us a bit about your brother and how encephalitis first affected him?

Answer: Yes, at the age of 27, my brother had what seemed like a common cold. Unfortunately, it developed into viral encephalitis and since 2019, he has been living with long-term seizures. It has been six years now and he still experiences regular seizures.

Question: What were some of the biggest challenges he faced during his illness and recovery?

Answer: One of the biggest challenges has been the inability to drive. Due to his seizures, he was initially not allowed to drive and he has now made the decision not to hold a driving licence at all. This has had a significant impact on his career, leading him to change jobs to one that does not require him to have his own car. He also has to take anti-seizure medication daily and undergo constant reviews with his consultants to adjust his treatment and maintain the best quality of life possible. However, when he is tired or stressed, he remains susceptible to seizures.

Question: How did this experience impact you and your family?

Answer: The biggest impact now is on his own family. He has two young children but cannot be alone with them in case he has a seizure. This means that we provide support whenever his wife needs to go out, ensuring that he is not left alone with the children. We also help with transport and other daily tasks, which requires a lot of planning and has inevitably limited his independence.

Question: What support systems have helped the most, and what role did organisations like Encephalitis International play in your family’s journey?

Answer: Encephalitis International has been incredible in raising awareness about the condition, particularly for family members who previously knew very little about it. I am fortunate to work for EUROIMMUN, where I am involved in encephalitis diagnostics. This has given me a better understanding of the condition, allowing me to explain it to family and friends. I have also come across the children’s materials provided by Encephalitis International. While my brother’s children are still young, I can see how valuable these resources will be when they are older and need to understand their father’s condition. The work that the charity does is amazing and I am grateful to be involved in fundraising activities to support and raise awareness.

Question: What do you wish more people understood about encephalitis and its long-term effects?

Answer: Awareness is key. Many people do not realise the lasting impact encephalitis can have on someone’s life. It’s not just about the initial illness—it’s the long-term effects, like seizures and lifestyle adjustments, that continue to shape daily life.

Question: Why is raising awareness through campaigns like #RED4WED so important to you?

Answer: Campaigns like #RED4WED help keep encephalitis in the public eye, ensuring that more people understand the condition and its effects. Awareness leads to better support, more research and advancements in diagnosis and treatment. Every little bit of awareness helps make a difference.

Question: How can people support those affected by encephalitis?

Answer: There are so many ways to help. Getting involved in fundraising activities, attending events and supporting those who work within charities like Encephalitis International can make a real impact. Even just taking the time to learn about the condition and spread awareness can help those affected feel understood and supported.

Raising awareness is crucial in ensuring that those affected by encephalitis receive the support they need. By participating in campaigns like #RED4WED and supporting organisations dedicated to research and advocacy, we can all play a role in making a difference.