Paul: Encephalitis Lived Experience
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- Опубликовано: 12 сен 2024
- Paul, who was affected by encephalitis as a teenager, shares his story with us, and the impact encephalitis has had on his life.
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It’s a relief to know that encephalitis is a long term illness. I thought I was just not doing enough to get well. Almost 2 years now with constant little relapses, pressure in my head, and altered temperament, with constant mental fatigue. It does change a person.
Thank you for your comment and for sharing this with us Penelope. You are not alone - our support team are here for you any time you would like some information, support or advice, please reach out to support@encephalitis.info, or call +44(0)1653699599
We are the same.. I had encephalitis too.I wish I could go back the Time I was before.. It's really painful to accept that I am not the same anymore as who I was before.
Encephalitis is a thief.. 😥😥
Thank you for sharing with us about your encephalitis, Christina. We are here for you, please get in touch at support@encephalitis.info, or +44(0)1653699599. You are not alone.
I agree encephalitis is a thief! I had viral encephalitis when I was 10 years old. it sucks to have to start all over again in trying relearn to talk, walk, spitting, sticking my tongue out of my month! Remember we are resilient people!
Poor guy. I also have autoimmune encephalitis. My heart goes out to him
I was diagnosed with Encephalitis HSV 1 year 2016, Philippines. I feel different now but I need to face it. I was told by my Neuro and Infectious Diseases Doctor that they did not expect me to survive back then. But, I did, so - no other way but to move forward and maximize the daily chances I have :D
Let's continue to smile and wave.
Thank you for your comment, Panda Mako, and for sharing your wonderful positivity with us. We are so sorry to hear of your HSV encephalitis in 2016. You are not alone - we are here for you. Please do not hesitate to reach out to us at support@encephalitis.info, or +44(0)1653699599 any time you have a question.
Hi po, Pilipino here. Ano po naramdaman nyo during those days? Nilalagnat po ba kayo while you are in the hospital?
Ilang weeks or months po ba kayo nakarecover?
Hi Paul, i can see where you're coming from. I can see you've been through a traumatic time especially às a teenager and the huge difference it made to your life and must have been a nightmare for your family too. But I'm so pleased that you met Mel and went on to University such an amazing story! You have done extremely well to get where you are today. Best of luck for the future. Paula.
Thanks for sharing your story with us all Paul. Very moving to hear what you have had to go through and the support the Encephalitis Society can give to help.
Thanks for listening, Paul. We are always here for anyone who has been affected by encephalitis - www.encephalitis.info/support has all the details of how to get in touch.
Nice one Paul. 👍🏾 Your story is truly inspirational
Wishing you the very best ☝️I caught encephalitis exactly a year ago in SE Asia, spent months in hospital then a brain injury rehab. Hearing others talk gives me strength to come to terms with my own illness.
Thank you for watching, and for your kind words Richard. We are here for you. If ever you need any support please don't hesitate to get in touch with us at support@encephalitis.info, or +44(0)1653699599. You are not alone.
it is indeed rough
Hello,how are you now?❤
Thank you for sharing your story Paul ♥️
Thank you for sharing your story Paul!
love it
how do you get attention to tbis disease via video my daughter is 17 and cannot get treated
Hi, if you would like to access some support for encephalitis we have a helpline +44(0)1653 699599 or email support@encephalitis.info
Can encephalitis effect us in later life? Like I'm 58 but had it at 12 months!
Hi LadyDiva, thank you for your comment and question, and we are sorry to hear of your encephalitis at 12 months. Encephalitis is an inflammation of the brain, so usually an acute event (like when you were very unwell at 12 months). During this event, neurons may be damaged, and this damage is termed an acquired brain injury or ABI. No two people affected will have the same outcome, but the effects of encephalitis can be long term. If you have any more questions, would like some advice, support, or just to find out more you can get in touch with our friendly support team at support@encephalitis.info, or +44(0)1653699599. We are here for you.
I also had encephalitis at 1 year of age and I am in my 40's now. I believe that when babies develop encephalitis that their brains are just developing so this is when the swelling/ inflammation of the brain takes place, and usually have their worst symptoms in childhood, and over a period of years that they start to improve "gradually" and in the end they have very few problems in comparison th their early years 'if mine is anything to go by' I don't know, but it might just help you in some way that you have "somebody you can relate to' already. Pease feel free to ask me any questions and/or share experiences with if you wish. What type did you have? I had HSV1 encephalitis. But try to think positive about the future and/or imagine doing nice things if nothing else. I am always willing to help if I can. It's nice meeting you LadyDiva. It's interesting to know that someone else has had the disease longer than myself because I thought I WAS the one who had it the longest so this makes me feel a lot better now. I wish you all the best! Paula
I also had encephalitis at 1 year and I am in my 4's now. So as far as I am aware I don't thunk so. It doesn't affect me that much, although, maybe a little bit i.e severe OCD, executive functioning, keeping up in conversation, information processing, reduced speed of thought and slowed responses, concentration/attention span, pranoia, frustration, anger, depression, panic attacks, I used to suffer from epilepsy years ago untl I was 18 when they stopped , so I have been fine since then.
I am pretty much similar to the average person. What symptoms do you suffer from LadyDiva ? You can Google any of these if you think you can relate to anything I have. I hope I have managed to help you in some way.
The Encephalitis Society I went through covid 19 n made it then I found out I had Lyme disease and never got treatment I feel scared that I might have this problem and no one in New York want to check me for it
@@paula_morton912did u got treatment at the age 1 . And what was the treatment and did it cause any brain damage or learning ?