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Personal Story about anti-NMDAr encephalitis

Personal Story about anti-NMDAr encephalitis

July 28, 2017 | Barbara Layt Vujaklija

Interview with Sarah Galloway
If not for a chance blood test, Sarah Galloway at age 22 while in her final year at Oxford University, would never have discovered that she had been incorrectly diagnosed with bi-pola disorder and in fact had Anti-NMDAr Autoimmune Encephalitis.
Sarah became ill in 2013 and was diagnosed with the most common type of autoimmune encephalitis in 2014, Anti-NMDAr encephalitis. Anti-NMDAr was first identified in 2007. Originally thought to be rare, it is realized now to be much more common than originally thought. Since it is a newly discovered Central Nervous System disease, few Neurologists are familiar with these disorders and most have never seen a case. For those reasons and because it mimics more common disorders such as Bi-polar disorder and Schizophrenia, patients are often misdiagnosed and it is not unusual for them to be incorrectly sent to a Psychiatric facility.
Sarah had been suffering from Psychosis, short term memory loss, lack of concentration and focus which was showing up in every aspect of her life. Her work as an Artist began to wane, her painting reflecting the signs of her failing ability to focus. Erased from her memory was her ability to play the piano. The instrument with it’s black and white keys stood silent and alone as Sarah was no longer able to retrieve her memories of how to play. The piano was a mystery to her now, holding no clues as to how to create the music it once delivered into her life. Gone was the treasure of the ability to read. Large pieces of who she was and what she understood of the world around her, the cognitive abilities we use in the smallest of daily tasks, eluded her.
Autoimmune Encephalitis is a condition where the immune system creates an antibody that begins to aggressively attack healthy brain cells. The onset of the disease can be swift and dramatic. Best outcomes are reported with early diagnosis and treatment. The treatments for autoimmune encephalitis are to suppress the now over active immune system.
Sarah had several different treatments for her autoimmune encephalitis but it was after her
second treatment with Rituximab that she was suddenly able to read. The piano no longer stood alone and silent, as her ability to play it returned. To her joy, she was able to concentrate on her painting again. The doodles of many bits and pieces, her past efforts at expressing herself through art in her struggle while her own immune system set about attacking her brain, were no more. Sarah’s ability to produce art returned with her regained ability to focus on the subject matter.
Sarah Galloway has residual injury from her autoimmune encephalitis. She still sufferers from some short-term memory loss, word finding challenges and explains that she finds that in 1 on 1 conversations, she has no filter, and is likely to say anything. She has come a long way in her journey with autoimmune encephalitis and has done her best to share her story in order to raise more public awareness of the disease. Sarah recently shared her story at a London conference hosted by Encephalitis Society and has agreed to be an Ambassador for IAES and refer people to our non-profit for additional education and support.
A familiar story to all who suffer from AE, caregivers and families alike. What sets Sarah apart is an article written in December of 2016 on the subject of AE versus mental illness on BBC.com (British Broadcasting Company) by James Gallagher, Health and Science reporter for the BBC news website, entitled “Some Psychosis Cases an ‘Immune Disorder’. The story also featured Susannah Cahalan, author of the book “Brain on Fire: My Month of Madness”. The BBC article was inspired by an article on Autoimmune Encephalitis (AE) in the British medical Journal “The Lancet” and is available at BBC.com at this link http://www.bbc.com/news/health-38220610 .

Today Sarah’s life, although changed, is back on track; as is her reading, piano playing and Art. Although she realizes that her life may never be as it was before Autoimmune Encephalitis she states, “I am learning to accept where I’m at but I haven’t stopped fighting. I don’t want to make this just a gap but to live life to my fullest capacity”.
Sarah remains on Rituximab and hopes to experience further improvement. As a patient with Autoimmune Encephalitis myself, I found her to be an inspired and inspiring young woman. Thank you for sharing your story with International Autoimmune Encephalitis Society (IAES) Sarah. Your determination and positive attitude is an example to us all.
You can view Sarah Galloway’s art here: https://royelartwork.wordpress.com/
View “Butterfly Brain – Encephalitis Documentary” a 12 minute short film about Sarah’s story at https://youtu.be/lUI94VL6x8s

Some psychosis cases an ‘immune disorder’ – BBC News

Some patients with schizophrenia or bipolar disorder may have a treatable immune disorder, a study suggests.

bbc.com

Interview with Sarah Galloway
If not for a chance blood test, Sarah Galloway at age 22 while in her final year at Oxford University, would never have discovered that she had been incorrectly diagnosed with bi-pola disorder and in fact had Anti-NMDAr Autoimmune Encephalitis.
Sarah became ill in 2013 and was diagnosed with the most common type of autoimmune encephalitis in 2014, Anti-NMDAr encephalitis. Anti-NMDAr was first identified in 2007. Originally thought to be rare, it is realized now to be much more common than originally thought. Since it is a newly discovered Central Nervous System disease, few Neurologists are familiar with these disorders and most have never seen a case. For those reasons and because it mimics more common disorders such as Bi-polar disorder and Schizophrenia, patients are often misdiagnosed and it is not unusual for them to be incorrectly sent to a Psychiatric facility.
Sarah had been suffering from Psychosis, short term memory loss, lack of concentration and focus which was showing up in every aspect of her life. Her work as an Artist began to wane, her painting reflecting the signs of her failing ability to focus. Erased from her memory was her ability to play the piano. The instrument with it’s black and white keys stood silent and alone as Sarah was no longer able to retrieve her memories of how to play. The piano was a mystery to her now, holding no clues as to how to create the music it once delivered into her life. Gone was the treasure of the ability to read. Large pieces of who she was and what she understood of the world around her, the cognitive abilities we use in the smallest of daily tasks, eluded her.
Autoimmune Encephalitis is a condition where the immune system creates an antibody that begins to aggressively attack healthy brain cells. The onset of the disease can be swift and dramatic. Best outcomes are reported with early diagnosis and treatment. The treatments for autoimmune encephalitis are to suppress the now over active immune system.
Sarah had several different treatments for her autoimmune encephalitis but it was after her
second treatment with Rituximab that she was suddenly able to read. The piano no longer stood alone and silent, as her ability to play it returned. To her joy, she was able to concentrate on her painting again. The doodles of many bits and pieces, her past efforts at expressing herself through art in her struggle while her own immune system set about attacking her brain, were no more. Sarah’s ability to produce art returned with her regained ability to focus on the subject matter.
Sarah Galloway has residual injury from her autoimmune encephalitis. She still sufferers from some short-term memory loss, word finding challenges and explains that she finds that in 1 on 1 conversations, she has no filter, and is likely to say anything. She has come a long way in her journey with autoimmune encephalitis and has done her best to share her story in order to raise more public awareness of the disease. Sarah recently shared her story at a London conference hosted by Encephalitis Society and has agreed to be an Ambassador for IAES and refer people to our non-profit for additional education and support.
A familiar story to all who suffer from AE, caregivers and families alike. What sets Sarah apart is an article written in December of 2016 on the subject of AE versus mental illness on BBC.com (British Broadcasting Company) by James Gallagher, Health and Science reporter for the BBC news website, entitled “Some Psychosis Cases an ‘Immune Disorder’. The story also featured Susannah Cahalan, author of the book “Brain on Fire: My Month of Madness”. The BBC article was inspired by an article on Autoimmune Encephalitis (AE) in the British medical Journal “The Lancet” and is available at BBC.com at this link http://www.bbc.com/news/health-38220610 .

Today Sarah’s life, although changed, is back on track; as is her reading, piano playing and Art. Although she realizes that her life may never be as it was before Autoimmune Encephalitis she states, “I am learning to accept where I’m at but I haven’t stopped fighting. I don’t want to make this just a gap but to live life to my fullest capacity”.
Sarah remains on Rituximab and hopes to experience further improvement. As a patient with Autoimmune Encephalitis myself, I found her to be an inspired and inspiring young woman. Thank you for sharing your story with International Autoimmune Encephalitis Society (IAES) Sarah. Your determination and positive attitude is an example to us all.
You can view Sarah Galloway’s art here: https://royelartwork.wordpress.com/
View “Butterfly Brain – Encephalitis Documentary” a 12 minute short film about Sarah’s story at https://youtu.be/lUI94VL6x8s

Some psychosis cases an ‘immune disorder’ – BBC News

Some patients with schizophrenia or bipolar disorder may have a treatable immune disorder, a study suggests.

bbc.com

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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