In Memory of Shawn Kregan (SK2018)

[kms1990]

Im very sad to report that SK2018 passed away this week from complications of his disease. May he rest in peace. He was a fighter and traveled the globe to try treatments he and his doctors thought would help him. He did not go gentle into the night. He fought till the end

 

[Gingergrrl]

Im very sad to report that SK2018 passed away this week from complications of his disease. May he rest in peace. He was a fighter and traveled the globe to try treatments he and his doctors thought would help him. He did not go gentle into the night. He fought till the end

@kms1990 Oh dear God, I am so sorry to hear this. I had so many conversations with Shawn, on the board and by PM, but had not heard from him in quite a while and always hoped that he would update us again. Part of me wants to ask you if you are absolutely sure that he has passed away, just because I cannot believe it, but I know you would not post this if it were not true. May he rest in peace and he was an inspiration to me and many others.

 

[Gingergrrl]

@kms1990 Thank you for your PM and am now. Do you think it would be okay to share the link publicly on PR? I think it would raise awareness and others might be able to help. I am so sorry about this horrible news.

 

[crypt0cu1t]

I heard about it earlier on Facebook... I was in shock reading it because I had just talked to him not long ago and he said he was feeling better after trying Lemtrada...

Do you know if it was the AE itself or a complication of the AE treatment?

 

[Thinktank]

Oh please no, not another buddy... I know he was actively seeking treatment abroad. Does his passing have to do with any of the experimental treatments he did?

My condolences to Shawn's family and friends.

 

[J.G]

This is awful. I met Shawn in person in late summer 2016 in a cramped little Starbucks across the road from the hospital where he was having Rituximab treatment. Wearing a hospital gown under his clothes, he sipped his coffee from a disposable paper cup and took his lunch with single-use wooden chopsticks to reduce the chances of "catching something" while Rituximab worked over his immune system. He took a risk coming out to that Starbucks to meet with me, but he did. I think that bravery describes Shawn in a nutshell.

His depth of knowledge on AE impressed me, as did his experiences of treatment (and mistreatment) in various countries and the international network of medical professionals he built around himself with apparent effortlessness. I like to think that he died on his own terms, not in the hands of NHS incompetents, but travelling the world in search of a cure - his cure - raising awareness of AE everywhere as he did so.

Rest in peace, Shawn. You will be missed.

 

[kms1990]

@Gingergrrl Thats a nice idea. Thank you

Go Fund Me To Bring Shawn's Body Home


P.S. - also I know some are asked or are wondering the cause. I do not know specifics, but do know Shawn had multiple AE relapses and also tried many medications which potentially had serious side affects. In my mind the disease itself was the cause.

 

[erin]

Oh no! This is terrible, so sad to hear. I didn't realize that he was so sick.
Another life is gone, a young person who fought it hard, so actively seeking treatment. He traveled the world in his sick state. He provided so much info to this board, he'll be missed massively.

I remember him being beaten up and evicted from the London Hospital. He didn't deserved to be treated like that. Shame on you NHS, shame on you...

 

[RL_sparky]

What a shock. Shawn and I were in touch during a time where we were both doing the same treatment.
He gave me some great advise and helped me through a few glitches. He helped a lot of people in his time.
He will be missed.

 

[Wolfcub]

I didn't know Shawn personally, but do remember some of his posts here.
Bless his Soul. Now there's no more of what he suffered where he has gone!
My condolences to all his friends and family. God bless.

 

[Sidny]

Wow this devastating and very upsetting to hear- it was thanks to him I pushed my Nuerologist to order an encephalitis panel that discovered some serious antibodies. I had the same virus trigger my illness. This is hard to believe I thought he was doing better-May he Rest In Peace

 

[Diwi9]

This is terrible. Shawn came on PR trying to spread awareness of NMDA encephalitis. I got tested for the autoantibody because of his posts. He was so incredibly positive and wanted to help share information. May he rest in peace.

 

[Mary]

I'm really sorry to hear this. I didn't know Shawn, but I appreciated his presence on the board. His thread on CCI and Chiari has been pivotal for many. I just took a look at some of his photos on-line - what a talent! He will be missed --

 

[roller]

how very shocking... it seems, he died in a German hospital.

The following quote is from the GoFundMe page:

Shawn’s mom just sent this message to me and I wanted you all to see how much she appreciates your help. Thank you all for your help. We are getting there.

I would like to thank you all for all you are doing for Sean he didn't deserve the treatment he received being told it was all in his head ,he complained to me that the nursing staff ignored him and would leave him lying in his own urine and bowel mess he wanted them to do a pet scan but they wouldn't do one as they said it would do no good I was there at the beginning of the month I sat in his room from 9 am until 7 pm and the only time a nurse came in was to take his blood pressure I washed him and changed his bed, one time I was on the phone to him when I heard a doctor say to him you will have to try and move when he said that he couldn't I heard the doctor say you may just think that or words to that effect ,one time I phoned the dr hauss that was taking care of him only to be told that he was sick getting calls from people and that Sean seems to think that he knew better than him someone that has spent years in medicine initially I blame the doctors here at the western general hospital here in Edinburgh when he first got sick they also thought it was all in his head and that was the hospital they wanted to transfer him to .I spoke to Sean at 8pm on the Wednesday evening he said he would call back at 9pm when he didn't I thought he had just fell asleep then at 2am on the Thursday morning I got a call saying that they had found him dead in the bed and I can't stop thinking about how long he had been dead before they found him ,he once told me that the nursing staff were shocking apart from one nurse who was Russian but she wasn't always on duty . please pass on my thanks to all that are trying to help it is very much appreciated

 

[Rlman]

such tragic tidings...i am so so sad and shocked to hear this May Shawn Rest in Peace. My sincere condolences to Shawn's family. He shared so much useful and helpful info on this forum.

 

[Sidny]

So was the neglect his mother is referring to in the above post what he experienced in the UK or where he was being treated in Germany when he passed?

It’s very tragic what he had to go through to get help

 

[sb4]

Unfortunately, due to my experiences in hospital, I believe this 100%. Absolutely disgusting behavior by the western medical system. Why didn't they take his autoimmunity in the brain seriously?

 

[Inara]

This is shocking. I am so angry. I live in Germany, and it sounds absolutely realistic. Does anybody know which German hospital this was and who this Dr Hauss is exactly?

 

[Lisa108]

I don't know if it is the right approach though to share names and second hand info on the gofundme-page. Hope this doesn't backfire.

 

[vision blue]

It really is so sickening - and not surprising to many of us. I haven't been on since January (too hard) but when i got an email message saying he passed i came on to learn more- so sorry to hear it of course. I have followed his thread with great interest -in part because my worst also symptoms started from a herpes virus 5 years ago, though no one would or will believe me. and with several overlapping symptoms to sean. (but chronically ill iwth fatigue much longer).

thre's one thing i hope is not true but fear it is. is it true that those of us who have managed to know alot more than 99 percent of MDs (and i mean that in a technical sense- hundreds of academic studies read and understood etc.) - fare worse than those who leave it in the hands of the docs? Docs are not team players- not with thier "patients" anyway. it hurts us when we feel out of necessity that we much take control of the situation. So that feels like yet another blow when i think about that. I can't change knowing stuff (until my dementia kicks in for real) and to know that hurts rather than helps in our current medical system is something i find quite painful and infuriating (and tragic)

Have so many questions:

How old was he?

Did he leave any instructions about whether an autopsy was ok with him?
(and if so can we please learn from it).

How can i learn more about the current treatment he was having when this happened?

Can someone remind me if the mayo panel also found his anti nmda receptor antibodies?

(i actually by the way know another young man like this. he was in the process of appealing a disability decision when it happened. in his case, the pain killer dose was too strong (headaches) and killed him (not intentional) . but learned after death he had some anti neural antibodies. )