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Thank you everyone - now we are a cooking!

KeithB_S-A-S
2 Recommendations

Just a quick thank you to everyone who has filled in the sarcoidosis survey. We now have 230 responses and I can start dissecting the information to find out what REALLY happens to us sufferers rather than what general medical opinion assumes happens.

If you haven't got round to doing the survey there is still time as I will start collating the results on Monday with the initial report out by Saturday 4th July. The survey will stay open until at least September.

In the meantime I hope to be meeting a few of you at Friday's meet-up (7pm, Pitsea Leisure Centre, Basildon, Essex, UK) or at the Norwich meet-up on 4th July.

Keith

PS survey links:

British Sarcoidosis Survey 2009 with password of AWARE09 (in capitals)

American Sarcoidosis Survey 2009 with password of AWARE09 (in capitals)

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Sarcoidosis

7 replies

BUNKIE

Hi
Tried to get in but it is protected. Is there a code?
Bunkie

KeithB_S-A-S

Hi Bunkie - yes as above it is AWARE09 (in capitals)

Keith

priscurl

As an Australian, I feel totally left out. How do you set up a similar survey for Aussies or other nationalities such as Turks, Canadians, New Zealanders, South Africans etc. It isn't ONLY Poms and Yanks who get sarcoid.

Pris

KeithB_S-A-S

Hi Pris

I have offered to do this for other countries a number of times but it needs someone from the country concerned to provide me with an alphabetical geographical breakdown for some of the questions.
The only other work involved is local terms for procedures which may differ in some countries.

If you would like to volunteer to do this for Australia (and if anyone else reading this would like to volunteer for their own country) then please email me at UKsarcoid@live.co.uk and we can get the ball rolling. With current workload it would take about a week to get compiled, tested, amended and launched, with a few emails back and forth. You would then need to publicise it in your usual forums, etc.

The American one got started because Denise provided me with the appropriate information and backup, taking up an hour or two of her time and a few minutes every so often for queries. Obviously if it was for a non-English speaking country then a complete language translation is needed.

So all you Australians, Turks, Canadians, New Zealanders, South Africans etc - its over to you!

Keith

gonenatural

It didn't appear to be the same form I filled out before so I just filled it out the best I could from the desk.
Hope it helps some.
Good luck and thank you,
GN

Tired_of_tests

Yes, I would like to see one for Canadians too.
Or can I suggest one in general for the world and us Sarkies as a whole (no borders/boundries). Is that possible?

KeithB_S-A-S

Like I said - if there is a Canadian willing to volunteer help then by all means.

As far as world-wide is concerned then theoretically no problem but I doubt many people would be willing to scroll through 30-odd languages on every single question.

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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