Doctor Mike Hansen YouTube of may 6th... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Doctor Mike Hansen YouTube of may 6th autopsy findings

christylee profile image
11 Replies

I saw his previous video had been posted so I thought I would point out this latest you tube. Sorry I do not know how to link on my iPad. He discusses the relationship of APS and CAPS, that infamous cytokines storm.

I wondered if there was not some relationship when they were speaking of the antibody test for covid as looking for igm and iga because,they were part of the test along with lupus,anticoagulant that I had for APS

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christylee profile image
christylee
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Star13 profile image
Star13

is this it.... youtube.com/watch?v=KzKvIYw...

christylee profile image
christylee in reply to Star13

Yes that is it. Thanks

Vespa1 profile image
Vespa1 in reply to Star13

Thank you I found this really helpful. I’m still trying to work out if hubby who has APS diagnoses 2009 has been on warfarin since but still managed 2 more strokes while taking it should of received a letter or some form of clarification from somewhere on isolation. I am a teacher and my boss is currently being very understanding about me working from home but I’m getting concerned now about the lifting of some restrictions and children returning to school which will mean I have to return to work unless We receive some official notifications that he is vulnerable or high risk. Any suggestions greatly appreciated.

Ray46 profile image
Ray46 in reply to Vespa1

They are still working through the lists it seems, I got a text message confirming high risk status only today, letter to follow (plus a further 24hr delay before I open post).

Until now I have just assumed it, and it makes no difference to me right now because we're having food delivered anyway (without needing supermarket slots) and pretty much completely isolated at home. My wife has just come off furlough (although most of it she was sick, with covid, I was isolating from rest of the house anyway) and started working from home, at some point they may ask her to go in and then I will need that official status.

APS is still a rare disease, it isn't listed explicitly on any of the covid guidelines I have seen, and if you have other risk factors (I do) or take multiple medications (ditto) then I can see that, for us, each case might need individual review. That isn't going to happen overnight (in many places only the consultants are left in their "home" specialities, everyone below that is working covid).

I am sure that if you needed to you could chase up the status with your (his) doctors, I have just left it until they worked their way round to me because, for me, it made no difference. Well, apart from that I now have official paperwork to prove I am not paranoid/over-anxious when my wife starts that argument (it's a short argument anyway - "remind me who brought the disease home" wins every time) :-).

Vespa1 profile image
Vespa1 in reply to Ray46

Thank you, hopefully he still has chance of a letter.

HollyHeski profile image
HollyHeskiAdministrator in reply to Vespa1

Talk it through with your GP

I am triple positive APS, with secondary Sjrogens- I have self isolated from the very beginning, today I spoke to my surgery regarding routine bloods, the receptionist raised the question why I was not on the list? My doctor said it was because I was not on immuosuppresants. He then put me down as vunerable anyway as he had noted 2 autoimmune diseases, which wouldn't put me at any more risk than any one else but I would struggle to cope with the virus. He also booked my bloods as urgent - Monday appointment!

I dont think the docters know enough yet?

So yes, speak to your GP and discuss your concerns.

Vespa1 profile image
Vespa1 in reply to HollyHeski

Thank you for replying. The GP rang today in reply to an email I sent. She said hubby would not be on the high risk list from Government but neither were lots of other people that they have called the ‘Fragile’ group, which is where hubby sits within. She said if I was to learn anything from these forums and other research they would definitely be interested as this is a time of learning and that GPs willing to take note of what specialists are finding out on specialised areas. Also that they would write if asked to, to a 3rd party if needed to support our need to keep isolated because as a teacher I would be at risk of bringing it back into the house. She said that the medics were hoping there would be some guidance on what should happen to people who live in the same household as a ‘fragile’ person as we begin to return to work as there is nothing currently but they feel there should be. I feel much more at ease following replies and on speaking to the doctor so thank you.

KellyInTexas profile image
KellyInTexasAdministrator

I’m finding these series of videos very interesting. He put one on 4 days ago ( via zoom telemedicine) with an anesthesiologist and it was a question and answer format. It was fascinating.

I’ll see if I can find and link.

Thanks for putting this on!

KellyInTexas profile image
KellyInTexasAdministrator

Thank you So much for putting this on🥰

Kerlampert profile image
Kerlampert

I'm excited that this connection may be the reason for COVID.

christylee profile image
christylee

He also put another one out yesterday, I think, with another small study ibelieve from Harvard published in the annals of internal (not positive) medicine just 12 patients

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