Vasculitis UK

Volunteers Wanted!!

Volunteers wanted to take part in a study into "Fatigue in patients with ANCA Associated Vasculitis" ...Dr Andrew McClean is still looking for healthy volunteers between the ages of 50/60/70. But he is also looking for couples of a similar age (any age) where one of the partners has vasculitis and the other does not. It involves a very intensive and very interesting day at the Birmingham University Hospital, :-)

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I would love to take part but we live in Scotland, and it would be a three day trip for us. Is there anywhere in Scotland that could do the tests and pass them on.

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I don't think so because some of the tests have to be carried out on the day... Aberdeen Hospital sometimes carry out research projects ..you could volunteer there for their next research programme with Vasculitis.

All the best

Susan

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I am up for it if it can be done in London.

However it states that you are looking for "Healthy Volunteers". Forgive me if I am wrong, but if you have Vasculitis, you are not exactly healthy !! Or am I missing something here ??

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The hospital is comparing like with like... example 40ish year old with Vasculitis with a 40ish year old who is healthy.

male/male and female/female plus different ethnic groups.

The research will take 2 years to complete and is about 2 thirds way through.

It is an intensive research project into fatigue and Vasculitis.

Susan :-)

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OK, can you put my name down then please.

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Can you send an email to John jandsmills@btinternet.com and he will pass your email onto Dr McClean

Thank you

Susan

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I'm interested but would like some more details of wht it involves. I have vasculitis and am 48 my partner is a similar age and is healthy. Or I could bring a friend that lives near birmingham who is healthy and she is the same age as me? The later would be easier as I could stay with her? Is there a set day I would need to do it?

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Could you private message me with your email as soon as you can and I will get back to you :-)

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I was diagnosed with systemic vas. p-anca 2005 though am only recently finding the fatigue has kicked in, but as I'm a use it or lose it try not to succomb, however I don't drive and my husband would never agree to attend ,so sorry.

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Having been diagnosed as a vasculitis patient just over a year ago I am still unfamiliar with some of the terminology used on this site. What is ANCA Assosiated Vasculitis?

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Wow. How long have you got? The full answer is long and complicated! The short answer is that in some types of vasculitis a particular antibody called "anti-neutrophil cytoplasmic antibody" or ANCA is involved in the disease process. To make it more complicated, there are 2 types, pANCA and cANCA. The diseases involving ANCA are Wegeners, Churg Strauss, Poyarteritis Nodosa and Microscopic Polyangitis. However it is not always found in the blood of patients with these diseases, so it's not a reliable indicator.

For more information you can go to our website vasculitis.org.uk and look for the "Routemap", which you can read as a download. Or if you send us your postal address by private message, for £10 you can have a printed copy. It's 112 pages full of information about all aspects of vasculitis.

John & Susan

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Hi, I was diagnosed with Wegeners in 2006 you say that you have to be a patient with ANCA Associated Vasculitis. I am one of those that is a positive negative.... I have to be different! Would I sill be suitable for this study? I have just had a flare and had to have iv rituximab and cyclo (30/31 May). I am currently suffering badly with fatigue. I live in Coventry so not too far from Birmingham, I will be at Birmingham hosiptal this Friday for dental work so know Birmingham quite well.

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Hi Alison,

Very sadly, I think you are not eligible as you have to be in remission. Otherwise, you sound perfick!!

Hope the dentist is kind!

All the best

John

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I have had WG since 1994.I have been i nand out of remission 3 times. I had my last Rituximab in December 2011. I am currently in remission & would gladly volunteer.

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If you write to John jandsmills@btinternet.com he will pass your email onto Dr McClean

Thank you

Susan

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I am interested in taking part in this study and have friends in Birmingham to stay with if necessary. However, I'm hoping my wife Jean will join me in which case I will be commuting from/to Beeston (Chilwell), Nottingham.

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if you write to John jandsmills@btinternet.com he will put you in contact with Dr Andrew McClean, Derek

Thank you

Susan

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