The Encephalitis Podcast Ep 36 - Prof Arun Venkatesan: Death from Encephalitis

TRIGGER WARNING: In this podcast episode, Dr Ava Easton CEO Encephalitis International, talks with Prof Arun Venkatesan about the difficult topic of death from encephalitis.
This is something which will be sadly and unfortunately familiar to many families and friends who's loved ones have fallen ill from this condition.
If you have been affected by encephalitis and are in need of some support, please visit www.encephalit...
Our support groups are listed here www.encephalit...
Read more information about death from encephalitis on our website www.encephalit...
If you would like to donate to help fund research, information and support for those affected by encephalitis, please follow this link: app.donorfy.co...
Follow Encephalitis International
Facebook: / encephalitisinternational
LinkedIn: / encephalitisinternational
Instagram: / encephalitisinternational
TikTok: / encephalitisint

[@franharding7616]

My brother got mengiococcal encephalitis at age 17 in 1999. I found it really interesting you acknowledging those that die in the subsequent years due to the damage caused by encephalitis. My brother was left unable to walk / talk and also some damage to his kidneys etc. He managed 23 years before he finally succumbed to the complications of his health. I think it is important to acknowledge those seriously affected by encephalitis, as well as those who may recover.

[@encephalitisinternational]

Hi Fran, I am so sorry to hear about your experience of encephalitis. We host online support groups if ever you would like to connect with others who have similar experiences. They can be found here: www.encephalitis.info/online-support-meetings

[@realtarotwithmandz8848]

My perfectly healthy 10 yr old daughter presented with cold symptoms, and few hrs later a fever, and 3 hrs later a seizure and coma, she never woke up. The one thing not mentioned is that I have learned how important it is that an immediate MRI is done and some CT scans can look normal. My daughters MRI was delayed and she hemmoraged, and EVD was placed and she lasted 127 days before another seizure and sepsis. Our medical systems need more training. I truly beleive an MRI could have given her a chance at recovery. We had her medical journal published in Canada. Doctors need more awareness and also to listen to parents intuition. My gut said brain swelling. They told me Infuenza A was the cause. which she recovered from 2 days later. Encephalitis wasn't even considered until it was too late. Thankyou for sharing.

[@encephalitisinternational]

Thank you for sharing. I am so sorry to hear about your daughter. If ever you would like to connect with others who have a similar experience, we do have some online support groups. One for parents of children affected by encephalitis and one for those who have lost loved ones as a result of encephalitis. www.encephalitis.info/online-support-meetings
We also have a stories page if you wanted to share your story with those who visit the Encephalitis International website for support and connection. www.encephalitis.info/submit-your-story

[@paula_morton912]

Hi Ava and Michael,
Yes, the more we know about encephalitis, the way the brain works etc. Complications from antibodies attack the brain and cause inflammation/swelling. 20% deaths, working towards zero deaths worldwide is key. Good point Michael, there's not much room in children ( i.e like myself I was 1when I had encephalitis, there was not much room for the brain swelling) as there is for older adults. It is very interesting about the immune system. Yes, the capacity between the brain and skull is very interesting, Ava. There needs to be more specific treatments out for these antibodies and viruses that cause death. Early diagnosis is key, but many cases are misdiagnosed for other illnesses or a stroke. Whatever caused the Encephalitis has caused the swelling/inflammation leads to death, but all precautions to be taken to prevent death from Encephalitis. MMR vaccine is a good idea to prevent Measles Encephalitis . The more vaccines for different things, that can help to prevent getting it. Too many people around the world don't know what encephalitis. I really value your wonderful work Ava. Nobody deserves to lose a family member/friend. The support team are absolutely a marvellous help. Thank you so much Ava for everything you do for everybody who have had encephalitis and their loved ones globally. I'm also very passionate about preventing death from encephalitis too. It's a life threatening neurological condition. As Michael said, there needs to be more specific
training for medical staff working in this field , which can help to diagnose and treat encephalitis as early as possible, this can then lead to better treatment, maybe newer treatments and better outcomes. That's our aim,

[@masudpervez1341]

Given the sensitive nature of this discussion, can you provide insights on how families and friends can cope with the emotional impact of losing a loved one to encephalitis?

[@encephalitisinternational]

Hi, thank you for your question. We have resources and support that can be accessed on a variety of levels. For instance, we have a page on our website with downloadable resources if someone wants to read about how to help others who are dealing with bereavement www.encephalitis.info/effects-of-encephalitis/death-from-encephalitis
There is also our support line and email service for anyone who wants information. And we provide a place to talk to others through a specific online support group dedicated to those who have experienced death of a loved one from encephalitis www.encephalitis.info/online-support-meetings/
Our team receive specific training on helping people with loss and bereavement. If there is anything we can do to support you, please do get in touch [phone] [e-mail]

[@masudpervez1341]

@@encephalitisinternational Thx