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Vasculitis UK
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East Anglia Support Group

Hi Guys & Gals 

Is there an east anglian support group that meets occasionally? I've been diagnosed with GPA and am currently in remission but would be good to meet others in a similar position to myself! 

cheers 

Marcus 

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There is not one at the moment although there has been talk of setting up a group. If there are enough numbers of patients VUK could help. Where abouts are you in East Anglia Marcus. 

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In Norwich, I know of at least 1 other guy in Norwich that has GPA and we often talk. From what my consultant tell me there are around 30 other cases of GPA in east anglia. I would be happy to organise an event for those that are interested and your support would be much appreciated  

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That is great. VUK gave quite a few members in your area too. If you drop me an email susan@vasculitis.org.uk I will help you get started and VUK will help with support too. Thank you. 

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Hi there, my husband has GPA and although we live just into Lincs, he is treated at Norfolk & Norwich so we would be interested in having a support group. He sees Dr. Mukhtyar, a really lovely man. We changed to him when John told us of his existence. It's closer for us in Norwich than travelling to Addenbrookes where it was getting really busy. If I can help I will although husband just about to undergo 1st hip replacement on Weds, needs replacing due to steroids.

Let us know and keep in touch

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Hi Nadine,

I'm also treated by Dr Mukhtyar! He's a real expert in our condition! I'm currently liaising with the admin of this page to set something up so will keep you posted! cheers :) 

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Dr Mukhtay is amazing and hopefully we will be seeing him at the BSR conference in Glasgow in two weeks :-)

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Dr Mukhtay is also a very nice person and really cares about his patients :-)

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I don't think he's a real doctor, his hand writing is beautiful!!!

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That reply made us both smile very much Nadine :-) John was an NHS dentist and his handwriting is terrible :-(

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I am down close to the 'Tendring Sunshine Coast'- you have probably all visited us, on holiday.  My nearest town is Colchester, though I am under Ipswich Hospital-for 'on going' treatment.

I don't know if this helps much, I'm afraid.

Best wishes anyway

AndrewT 

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Hi Andrew, 

I'm currently liasing with the admin team of VUK to set something up, will keep you posted. I was thinking of Thetford for meetings as its easy to get to and fairly central to the east anglian cities... 

Marcus 

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Sounds a very reasonable choice, to me Marcus.

AndrewT

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Hi I'm Wood bridge in Suffolk. I've tried before, but with little interest, my problem is transport. I have to rely on other people to drive me to appointments ( four this week alone). So if it was somewhere resonable I would be interested. There is a support group in Cambridge which needs to be taken into consideration, so maybe needs to come further east.

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I think Thetford is great idea it is very central and can be easily reached from Ipswich, Bury St Edmunds and Norwich. I think it would be advisable to liaise with the Cambridge support group so the meetings do not clash and also give people an alternative support meeting to go to if they should live in the Norfolk Suffolk area.

  

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This would be a great idea, easy access for my self only live 5 miles away in Brandon.

Would be good to meet and talk to other sufferers.  Please keep us informed,  Cris

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