Hughes videos!: Wow that seemed to take... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Hughes videos!

Suzypawz profile image
20 Replies

Wow that seemed to take forever!!!

As promised here are the links to the videos I uploaded to you tube over the last few days!! :) :)

I hope they are ok, I tried my best with what I've got :/

Here is the 1st video link:

youtu.be/rtpjztIdfns

Here is the 2nd one:

youtu.be/MaiT_-_ifBM

Here is the 3rd one:

youtu.be/jvEVrtZwT24

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Suzypawz profile image
Suzypawz
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20 Replies
DorothyItaly profile image
DorothyItaly

Well done kiddo they work. Dx

Suzypawz profile image
Suzypawz in reply to DorothyItaly

Thanks hun :) xx

Fantastic! Thank you so much. Will be forwarding to my GP tomorrow!

Paul x

Suzypawz profile image
Suzypawz in reply to

Aaahhhh so glad it will be of some use :) x

MaryF profile image
MaryFAdministrator

Great stuff, thanks for doing this, nice to see your view of things as well as the patients day one that is on here. Thanks for doing this. Mary F x

Suzypawz profile image
Suzypawz in reply to MaryF

I'm just so glad it is of use & to help others hear the meeting too............I do hope you like my images too :) I like to share them with others :) xx

CanaryDiamond10 profile image
CanaryDiamond10

Thank you, Suzypaws! Very well done. I will be passing this along to my docs. Any awareness it brings them can ony be good. Canary x

Suzypawz profile image
Suzypawz in reply to CanaryDiamond10

Thank you for your support :) I'm so glad I may have done something right....I just hope I dont get docs hating me .......... any more than they already probably do!!! & setting up a lynch mob!!! ;) x

KellyO profile image
KellyO

Wow, you did a great job!!

Suzypawz profile image
Suzypawz in reply to KellyO

Aaaaahhhhh thank you :) x

TreyBon64 profile image
TreyBon64

I've posted mine on facebook, made a note of the video 'addresses' (bear with me I have brain fog today) and put the videos in a playlist so I can let my gp's know and they can become educated ... AGAIN. Well done Suzypaws xxxx

TreyBon64 profile image
TreyBon64

I know this is the American one ... but it is very informative, especially for trying to get friends and family to understand what APS/Hughes is ...

youtube.com/watch?v=3XCKnxX...

lovemycat profile image
lovemycat in reply to TreyBon64

Thank you! I could not understand the British video, but this was clear and informative. I hope my family will listen to this as I find it difficult to explain what has happened to me and what exactly this disease is all about.

TreyBon64 profile image
TreyBon64

It would be great if we could have had something like this highlighted on a major radio station.

Suzypawz profile image
Suzypawz in reply to TreyBon64

Too true.....it's just getting it in there...it really needs someone recognised to push it better too.....I may have a contact that might be used, hes not really famous....but he was in a few films!If I could convince him to help you never know?................

Thanks for your support x

CanaryDiamond10 profile image
CanaryDiamond10

You know, you may have a great idea there. If it were played over the Public Service Announcement Stations (free radio time) at Universities you would be hitting exactly the age group that the disease hits most often. Exactly the people who need to know it's out there. Those universities with schools of medicine would be best. They would also probably welcome some discussion of Hughes by professionals and patients for an hour show. They are always looking for good material and professionals to donate their time. But, "Good ideas are but a passing thought until they are put into action." I don't have it together enough right now to do that. My memory is not up to par at this time. I'd sure like to see the result of total awareness though.

Suzypawz profile image
Suzypawz in reply to CanaryDiamond10

Any ideas are good ideas, if any one can think of anything to help or have contacts they may be able to use it would help hugely in getting the word out there x

jessielou profile image
jessielou

Fantastic job Suzi, amazing how much didn't register even though I was sat right next to you. :-)

Love n hugs xxxxxxx

paddyandlin profile image
paddyandlin

WEll done Suzy you did really well

Suzypawz profile image
Suzypawz

Thank you guys :)

Yes there was bits I hadn't taken in so it was useful for me too :) x

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