Living with Churg Strauss - video

[Katie18]

Last December GSK pharmaceutical company asked Vasculitis UK if they could put them in touch with people living with Churg Strauss Syndrome who would help them make a video to show their scientists and researchers what it's like living with the disease. The aim was to encourage them to do more research into it. I volunteered as anything that helps find better treatment or a cure must be a good thing.

Im sorry the video is very long and repetitive as it's the uncut version and I was responding to questions they asked me. But as its my story I can share it with you and you can always listen to just some of it.

I thought it may be of interest to other 'churgies' who are going through similar things. Hopefully the link will work.

"fileshare.wearethemoment.co...

You might need to copy and paste the whole Link into your browser.

[LynneJ Vasculitis UK Volunteer]

Well done you x

[RichardE Volunteer]

Well done Cath. Great thing to do for vasculitis awareness.

[sealives]

Thanks for publishing. As a fellow churgg strauss sufferer a lot of what you said resonates with my experiences. Its very difficult to manage and very draining, as you know. I truly hope in time it gets better for both of us.

[Katie18]

Thanks Sealives - lets hope so - all the best Cath

[charlieab]

I thought it was excellent. And not sure I noticed much repitition.

[Katie18]

Thanks Charleab -,they kept asking me to do chunks again. It's the uncut version but the only one I've seen and got rights to share - I'm sure GSK will trim it a lot for their scientists.

[Katie18]

If anyone would like to share their story with GSK my contact is email [e-mail]

[Skipper55]

I have tried evey avenue to get to this link even copy c and V which takes me to the google options naming the video but that only tales me back to health unlocked. has anyone got to the video as I am stumped and great that you have done this , as I feal like I am an island here is Australia

[Katie18]

Hi Skipper you could email me [e-mail] and i will email back the link to see if that helps? Otherwise copy the link above, open google chrome or another search engine and paste it into the top box without the inverted commas at the beginning and end and that should work thanks cath

[Cass77]

Hi There Katie18, I’m waiting to find out if I have CSS. I’m having problems seeing the video too. I’ve tried everything including pasting it into my search engine without the inverted commas but still nothing. Can I email you and you send it to me directly please?

Thank You