East Yorkshire 2018 Meeting

posted 28 Sep 2018, 08:35 by Richard Eastoe   [ updated 27 Oct 2018, 04:18 ]

We’ve quickly scheduled another meeting for Sunday the 18th of November at 2:00pm. It will be held at St Barnabas Church Hall, Swanland, to the West of Hull.

See our meetings page here for details.

ANCA Associated Vasculitis Patient Survey

posted 27 Jul 2018, 09:00 by Richard Eastoe   [ updated 27 Jul 2018, 09:07 ]

Survey on the Withdrawal of Maintenance Therapy for ANCA Associated Vasculitis and SLE 

Professors Lorraine Harper and Alan Salama are interested in studying people with ANCA Associated Vasculitis (AAV) and Systemic Lupus Erythematosus (SLE) to look at the effect of the withdrawal of immunosuppression on rates of infection versus the risks of relapse.

The study they are proposing would be aimed at patients who they identify as being at low risk of relapse and who would currently expect to be having conversations with their clinicians about reducing and coming off their medication.

As well as gaining a better understanding of the risks of infection versus relapse, the study also wants to see if they can understand what it is that allows some patients to remain in remission whilst others cannot. This could ultimately lead to a more customised and individual treatment for patients.

In order to find out what patients might think about this, Alan and Lorraine have set up an online questionnaire for those of you with AAV or SLE to fill in.



So, if you have either  :

     Wegener’s (Granulomatosis with Polyangiitis – GPA)
or
     Microscopic Polyangiitis (MPA)
or

     Churg Straus Syndrome (Eosinophilic Granulomatosis with Polyangiitis – EGPA)
or
     Lupus (SLE)

I’d definitely recommend that you have a look and have your say. It’s a great opportunity for us as patients to have a direct input into research into our condition. Potentially making a difference for future patients, if not ourselves.

Here’s the link to the online survey : https://www.surveymonkey.co.uk/r/THXPGFJ

Fundraising for Vasculitis UK

posted 23 Jul 2018, 07:59 by Richard Eastoe

For those of you who knew Lynne Jacques, who sadly died earlier in the year :

Gordon Brown, a friend of Lynne’s son Joel, will be running in the Great North Run in September, to raise funds for Vasculitis UK. See the link below for details of Gordon’s Just Giving donation page.




Leeds BRC Biologics Presentation 2/8/18

posted 23 Jul 2018, 07:38 by Richard Eastoe   [ updated 23 Jul 2018, 07:46 ]

The Leeds Biomedical Research Centre (BRC) at Chapel Allerton have a Patient and Public Involvement event coming up in August that some of you might be interested in. They’ll be talking about the use of biologic drugs (such as Rituximab) in treating connective tissue and autoimmune diseases like vasculitis.

The event is on Thursday the 2nd of August and runs from 10:45am until about 1:00pm. A buffet lunch will be provided free of charge.

See the Leeds BRC website here for more details :

http://leedsbrc.nihr.ac.uk/event/ask-the-researcher-biologics-and-your-body-how-what-why-and-when/

Or contact Gwyn Cracknell for more information :

G.T.Cracknell@leeds.ac.uk

Support Group Meetings for Spring 2018

posted 14 Mar 2018, 10:15 by Richard Eastoe   [ updated 14 Mar 2018, 10:29 ]

We've just booked the next two Spring support group meetings. One for York on Sunday the 15th of April and one for Gomersal in West Yorkshire on Sunday the 22nd of April.

See our meetings page here for details.


Scarborough Rare Diseases Meeting

posted 22 Feb 2018, 09:18 by Richard Eastoe   [ updated 22 Feb 2018, 09:22 ]

Ruth Newton, the specialist rheumatology nurse at Scarborough Hospital, has arranged another rare disease patient support meeting for Saturday the 10th of March between 10:00 am and 12:00 noon.

The meeting will be held in The Friends Meeting House, Woodlands Drive, Scarborough, YO12 5QZ. This is just down the road from the hospital on the right hand side, past the traffic lights.

Family and friends are welcome and light refreshments will be provided at the meeting.
 
Ruth will be talking about the whys and wherefores of blood tests. She’ll be happy to answer any questions too.

Please let Ruth know if you will be coming along but you can also just turn up on the day.

See Google Maps for directions.

Email : ruth.newton@york.nhs.uk

Or phone : 01723 385 058

Scarborough Rare Diseases Meeting

posted 14 Aug 2017, 12:42 by Richard Eastoe

Ruth Newton, the specialist rheumatology nurse at Scarborough Hospital, has arranged another rare disease patient support meeting for Saturday the 16th of September between 10:00 am and 12:00 noon.

The meeting will be held in the Blue Conference Room at Scarborough Hospital, Woodlands Drive, Scarborough, YO12 6QL. The room is located in the North Wing of the hospital, on the ground floor.

Family and friends are welcome and light refreshments will be provided at the meeting. The tea and coffee will be provided by the hospital and so donations towards the cost would be appreciated.
 
Ruth has arranged for Dr Shanali Perera to come and talk about Art and Healing. Dr Perera has vasculitis and there’s an item here about when she spoke at the recent Vasculitis UK education day in Manchester :

http://www.vasculitis.org.uk/news/news-shanali-perera

Please let Ruth know if you will be coming along but you can also just turn up on the day.

See Google Maps for directions.

Email : ruth.newton@york.nhs.uk

Or phone : 01723 385 058

South Yorkshire Lunch – Saturday June 10th

posted 11 May 2017, 11:02 by Richard Eastoe   [ updated 11 May 2017, 11:23 ]

A few folk have asked whether we will be arranging another South Yorkshire meeting. Turnout has previously been quite low so we have decided to arrange a more social pub lunch rather than book a hall.

Jenny Gosling has kindly agreed to help us organise this and has booked tables at The Angel Inn in Blyth, just off the A1(M) at junction 34.

The Angel opens at 11:30 on Saturday and will serve food between 12:00 and 2:00pm.

Just turn up and enjoy lunch chatting to others with vasculitis !

Please let Jenny know if you are coming so that we can warn the inn about our numbers.

Email jenny@yorkshirevasculitis.org.uk


See our Meetings page for more details.

Spring Meetings Report

posted 11 May 2017, 10:56 by Richard Eastoe   [ updated 11 May 2017, 11:17 ]

The three recent Spring meetings were well attended, so thanks to everyone who came along and made them a success. We hope you all enjoyed and found them useful.

At both the York and Hull meetings, we were privileged to have Ruth Newton, a specialist rheumatology nurse from Scarborough hospital, come along.
Ruth gave an excellent talk about her specialist nursing role, some guidelines on how to manage the disease and also some information on current research studies.


At our Gomersal meeting we were spoilt, having two professionals visit us.

Alan Pollard, specialist rheumatology nurse and Helen Worsnop, a physiotherapist, came along from Bradford hospital. Helen gave a very interesting talk on managing fatigue with vasculitis and maintaining general fitness. Alan took the floor to answer questions on vasculitis.

Spring Support Group Meetings

posted 8 Mar 2017, 14:59 by Richard Eastoe

We have three meetings coming up this Spring; in North, West and East Yorkshire.

The North Yorkshire meeting will be in York at Huntington Memorial Hall again, on Sunday the 2nd of April between 1:30pm and 4:30pm.
    
Lynne will be holding a West Yorkshire meeting on Sunday the 9th of April between 1:30pm and 4:30pm, at the Gomersal Park Hotel as usual.

Finally we'll be holding an East Yorkshire meeting at St Barnabas Church Hall in Swanland, close to Hull, on Sunday the 23rd of April between 1:30pm and 4:30pm.

Tea / coffee and biscuits will be available with plenty of time to chat to other people with vasculitis and we have speakers coming along to all three meetings.

Please see the meetings page here for more details.

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