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Cork Coffee and chat meeting, December 6th 2016

Coffee and Chat in Cork, 6th December 2016, Jury’s Inn, Anderson’s Quay

Kathleen Henebry and her husband came along early to our coffee and chat meeting, Patricia Ryan and Seamus Beusang and myself made up the numbers . We finally met up with Louisa and Karen from Eirball run and had a photo taken with the presentation cheque and were able to feed back to her how the money raised has subsidised our conference in November and helped our members.

 

By |February 21st, 2017|Categories: Uncategorized||0 Comments

NI Behcet’s support group

For details of meetings and more information, contact Fionnuala at bengie15@aol.com

By |February 21st, 2017|Categories: Uncategorized||0 Comments

Polymyalgia Rheumatica/Giant Cell Arteritis NI Support Group

New support group set up by Caroline Stewart which meets the second Monday, every two months at 11am, in Premier Inn Sprucefield, Lisburn. Contact Caroline at pmrgca.ireland@gmail.com. Next meeting will be in May. Contact Caroline on  pmrgcaireland@gmail.com

By |February 21st, 2017|Categories: Uncategorized||1 Comment

2014 All Ireland Vasculitis Conference

 

Thank you everyone who came along to our 3rd annual conference, the speakers and the staff of the Royal Marine hotel who made the conference such a success. It was a very full 2 days and good fun on the Saturday night.

Valerie Logan, Trinity Research Coordinator, came along on both days to answer any queries about taking part in the Vasculitis Research and how to participate.

 

Saturday kicked off with a short talk by myself about VIA, and our work to date,

Dr Eamonn Molloy, Consultant Rheumatologist, St Vincent’s, Dublin, gave us an informative talk about Vasculitis, the causes, the clinical features, symptoms, treatments, relapses, other issues, management, role of diet and exercise and the importance of research.

 

He was followed by an interactive talk by Patricia McCrystal, Chartered Psychologist, Specialist in Pain Management, Southern Health and Social Care Trust. Patricia explained the psychology and biology of pain, explored our beliefs about pain and the options we have to deal with pain, either dwell on how we used to be, how we will cope in the future or to live the present as much as we can. Basically for those of us who suffer chronic pain, pain is our reality, we should seek to understand it, learn how to pace our activities, nudge the edges of pain, get SMART goals- S pecific, M easurable, A chievable, R ealistic, T imely, think self compassionately, rationalize our thinking, move mindfully, and pro actively manage ourselves. Patricia has agreed to have a section on pain management on our website in the near future.

 

Prof Mark Little, Consultant Nephrologist, Tallaght, Beaumont, St James’s and Trinity Kidney Research. spoke about latest developments in Vasculitis research. A biomarker – CD 163, (protein for indicating inflammation), […]

By |August 22nd, 2016|Categories: Uncategorized||0 Comments

2012 All Ireland Vasculitis Conference

6th and 7th October 2012   l   The Royal Marine Hotel, Dun Laoghaire

This conference was a great success, with 42 patients, carers, and interested Healthcare professionals attending from all over Ireland. The venue was fantastic, with a lovely spacious room for our talks (great views), a designated dining room for our meals, helpful staff and very comfortable bed and breakfast facilities.

Neilmed kindly sent along samples and information about sinus rinse for distribution. The Citizen’s Advice Bureau, Dun Laoghaire, provided information booklets re benefits and rates for people from Southern Ireland and Downpatrick Social Security Office provided the equivalent booklets for people from Northern Ireland. Information on specific Vasculitis diseases was supplied by The Vasculitis Foundation, (there was only a few Granulomatosis with polyangiitis leaflets left at the end of the conference), who also gave magazines, wristbands, balloons and VF logo badges. We had information on Vasculitis UK, two reference copies of their newly printed Routemap for Vasculitis, with details of how to access this either online or by purchasing directly from the Vasculitis UK website. Thank you to all these people who provided this really useful information.

The conference opened with registration, time to meet others, and to look at the information available, and purchase our newly printed Christmas cards. After a welcome lunch of soup and sandwiches (especially for those who travelled long distances),I opened the meeting with a short talk about Vasculitis Ireland Awareness Support group, how we became, what we do, what we plan to do and the importance of fundraising to keep us going.

Dr Eamonn Molloy, Consultant Rheumatologist at St. Vincent’s Hospital, Dublin was the first of our […]

By |April 23rd, 2014|Categories: Uncategorized||0 Comments