Anti-NMDA Receptor Encephalitis - Hayleigh's Story
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- Опубліковано 22 сер 2024
- This is an Educational Documentary on Anti - NMDA Receptor Encephalitis. The purpose of this documentary is to help raise awareness on this disease using my own story and interviews with friends, family and my neurologist. I hope this will help to reduce the numbers in misdiagnoses so that patients can be treated sooner to avoid long term affects and uncertainty for families as well as experts (Doctors).
Thank you hailey my daughter is going through this horrible disease right now I've been looking for anything to help understand but there isn't much out there. This disease is extremely horrible I'm terrified for my daughter I'm praying she'll make it through Thanks for this video
Hello :) Thank you for your comment - I am really sorry to hear your daughter is going through this. Please contact the Encephalitis Society as they have been amazing in supporting me and may be able to answer any questions or concerns you have. Sending positivity and love to you, your daughter and family
Omg so happy she recovers ty for this video gives me hope tyxxxxx💕💕💕💕💕💕
God Bless you Haighley and your family and entire medical staff!
Thank you for this video it needs to be educated in hospitals the signs my daughter is 34 years old and had 1 st symptoms in January as far as we no fainting at work as she is a career them seizures also confusion hands out and twitching her fingers always looking at her hands then trashed hospital room she was phsycotic at that time we had many diagnosis none were correct ,she was sectioned in to carse veiw but before that she has a test a lumber puncture test and now diagnosed with anti NMDA receptor autoimmune encephalitis she had a an autoimmune drip that’s done now they putting her on a steroid drip but she is a little better but not herself well when I say a little what I mean is from before like when we visit sit there all day every day if we leave for 1 minute come back in the room she will say hi when did you come as she keeps forgetting have to repeat every thing every 2 minutes and she always says why ami in here you tell her she says ok thensame question on and on I just hope and pray I get my daughter back. She is now in hospital 18 March 2022 but this disease is the most horrendous disease obviously for her but also for the family as you no your child and when some one is giveing answers you feel so helpless as I knew my daughter was in there somewhere it so painful and hard to watch your child not knowing who you are and nothing we could do to help her
It's fair to say this video defines courage. Bless ya!
Hope you're getting better and better every day! Best wishes from Germany!
Thank You Dorothee - I take each day as it comes - things get better and then get bad but overall I just count my blessings everyday to have been able to have such a supportive family who never gave up on me - and pushed for a diagnosis :) x
God Bless You from Colorado 🇺🇸🌹
Thanks God you feel better
Wow I knew you fell sick but I didn't know it was so many illnesses. Hope u feeling better now.
Fantastic video!
God Bless you Haighley, I've had something similar, having seizure and stroke like episodes but MRI, CT and EEG are completely normal, I'm obviously not in a vegetative state but it's very hard to go about every day and Doctors can be somewhat dismissive. Doctors haven't run a test for this disease on me yet.
We have to be strong advocates for ourselfs - thankfully i had my family push for answers - but I would defo push for a lumper punch - at least if it comes back negative they can begin testing for other things. Im sending you all the love and positivity and hoping for answers for you ASAP!!
My son is 6 same thing was happening to him we found out today that it was this so looking at this video gives me hope but it's very scary cuz he just screams n like it's just not him so they're starting the procedure now but thx for sharing
Hi Anika, Sorry to hear about your son, I hope you are keeping well and finding as much information to support you through yours and your sons journey at this difficult time. If you need any further information please contact the Encephalitis Society (You can find them on a google search and Facebook). They offer a range of services and hope they can help you in any way. Sending my wishes to your son for a speedy recovery
Omg same my little sister 5 years old screams and reanacts abnormally.
Sorry to hear this - Has she been in hospital or had a diagnosis or is this just happening at home? x
My 18 y old son is hospital at this moment....doing same thing and we are waiting for test results from Mayo lab. Holding on to Jesus!
thank you for sharing your story...i am watching this documentary because i am lloking like my sister sympton...shes also having the same sympton but she undergo lumbar puncture but not diagnosed of anti mnda enciphilitis the doctor said she needs another test that to be done in spain but due to financial we cannot afford ...we admitted her for two weeks in thr hospital the doc first diagnose is rule out meningitis so they giving my sister antibiotics for two weeks but the result shes still having siezure and all her body is stiffining..we alr3ady discharge my sister because financially we cannot afford for the hospital bill...i hope there is a foundation helpinh like this illness..i feel helpless
Hi stefanie I would like to know how is your sister I know this happen more than a year ago. But I’m asking you cause my daughter has the same AUTO INMUNE ENCEFALITIS she is in the hospital for 3 weeks already. I hope your sister is better
@@luigui33 hello how je toi daughter plz ?
My daughter was diagnosed so many times non epileptic seizures then dissociation disorder then schizophrenia lots more none of them were correct
its so easy to misdiagnose based on the early symptoms however it can be very dangerous for the patient!! Im just so grateful for the people who pushed for answers for me!!! If they is anything I can do to help please reach out :)