In Memory of Shawn Kregan (SK2018)

Gingergrrl

Gingergrrl

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Countrygirl said:
On this link you can hear Shawn talking about his illness.
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Thank you so much for pointing that out @Countrygirl and I just listened to the voice memo of Shawn talking about his illness. It is only about 11 min and very clear and organized. It is also very inspirational how he did not give up in the face of many doctors who did not believe him. He is spot-on that many patients who have AE are never diagnosed with the anti NMDAR autoantibody and are instead placed in psychiatric wards where they are left to "rot". I wish his story could bring awareness to autoantibody testing (which most doctors know nothing about).

I just read through my last PM's with Shawn b/c I could not remember when they stopped. We chatted many times and the last PM was from June & July 2018. On July 17, 2018 he told me that he would be trying Lemtrada (Alemtuzumab) on Mon (which would have been July 23, 2018) but then I did not hear from him again. Does anyone know if he actually tried it and what happened? It sounded like he was also continuing with Rituximab every three months but it was not providing the symptom relief that he needed on it's own.

I am having trouble understanding why he did not receive proper treatment in the hospital especially b/c it was well documented that he had autoimmune encephalitis (AE). Did the doctors not believe him or just not care?
 
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crypt0cu1t

crypt0cu1t

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Gingergrrl said:
Thank you so much for pointing that out @Countrygirl and I just listened to the voice memo of Shawn talking about his illness. It is only about 11 min and very clear and organized. It is also very inspirational how he did not give up in the face of many doctors who did not believe him. He is spot-on that many patients who have AE are never diagnosed with the anti NMDAR autoantibody and are instead placed in psychiatric wards where there are left to "rot". I wish his story could bring awareness to autoantibody testing (which most doctors know nothing about).

I just read through my last PM's with Shawn b/c I could not remember when they stopped. We chatted many times and the last PM was from June & July 2018. On July 17, 2018 he told me that he would be trying Lemtrada (Alemtuzumab) on Mon (which would have been July 23, 2018) but then I did not hear from him again. Does anyone know if he actually tried it and what happened? It sounded like he was also continuing with Rituximab every three months but it was not providing the symptom relief that he needed on it's own.

I am having trouble understanding why he did not receive proper treatment in the hospital especially b/c it was well documented that he had autoimmune encephalitis (AE). Did the doctors not believe him or just not care?
Click to expand...
He did try Lemtrada and he said it made him feel about 70% better, which is why is death shocked me so much... I read through my Facebook messages with Shawn and his last message to me was "Don't worry bro, it gets better" 😭😭😭
 
kms1990

kms1990

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There are many questions regarding his death, and I dont think there is solid information to share at this point only speculation. I was told by someone who spoke with him often that the combinations of medications he was given in various countries wiped out both his b and t cells entirely (this is a very serious treatment only done in critical circumstance). He was then told by a doctor that his condition was irreversible and he would continue to deteriate. This was about one month ago. I do not know much more than that.
 
lafarfelue

lafarfelue

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Absolutely devastating. RIP Shawn. :heart: Nothing I say will convey the sadness and uselessness I feel at our and the world's loss.

(I posted the above on another thread, I just feel that Shawn deserves as much recognition in this thread as possible.)

Thank you for sharing the GoFundMe page and additional information, @kms1990.
 
Gingergrrl

Gingergrrl

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Lisa108 said:
Here is an article about Shawn (Sean) in the Edinburgh News. Warning: It contains a more current picture of Shawn, which shows him physically much altered, probably due to cortisone.
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That was hard to read but thank you for sharing it with us, Lisa. I wonder if Shawn's mother knows about Phoenix Rising and how much he meant to our community? I feel so badly for what she is going through right now :cry:
 
Gingergrrl

Gingergrrl

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Lisa108 said:
So here is another news article, this time focussing more on the fundraising for Shawn/Sean. A part of the raised money will be used for a private autopsy.
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Just watched the video by Shawn's friend Carley and that was heartbreaking 💔 💔 💔... I am hoping they will raise enough money to bring Shawn back to Scotland, to have a proper autopsy and burial, and to figure out the cause of death.
 
Gingergrrl

Gingergrrl

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Lisa108 said:
Here are 3 news articles about Shawn from Nov. 2018, which give a bit background of his odyssey. (They used yet another way of spelling his name...)
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Thanks for sharing these, Lisa, and I think the media is confused about the spelling of Shawn's name b/c he used a different spelling for social media and internet boards (probably to protect his confidentiality). I only knew him as "Shawn" which is why I keep using that spelling.

I finally got a chance to donate to his GoFundMe a couple days ago so I am getting some of the updates via e-mail even though I am not on social media. It seems like they still have a long way to go. Some of the earlier links, and his voice recording with the AE Association, sounded so hopeful and bright like you said :aghhh:
 
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