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So far DevineDesign has created 3 blog entries.

Brian makes sure to stop and smell the roses!

In the first of our members blogs, we hear from Brian and how he has managed his illness since being diagnosed in 17 years ago:

My name is Brian and I  was diagnosed in 1999 with G.P.A or Wegeners. 

I was hospitalised with the treatments of chemo and drugs to combat lungs, kidney, sinus and throat involvement . Since then I have had a few relapses although Prednisolone taken daily seems to keep me in remission.

I have always been interested in gardening and since my wife had a stroke two years ago necessitating my becoming a carer to her, my time to follow my hobby has been curtailed.  Despite this and my developing osteoporosis  and arthritis, I still manage to grow a few flowers and tend shrubs. A friend cuts my grass and hedges leaving me to do the easier and more pleasurable gardening jobs while sitting down often to survey my work and plan further jobs. 

PS. Early next year I will be 80.
 
 
Do you want to share your story for others to see? Email julie@vasculitis-ia.org 
By |September 30th, 2015|Categories: Our Members||0 Comments

2013 All Ireland Vasculitis Conference

Hello Everyone,
Well we had another sucessful conference attended by 27 members. Thank you to all who came along, to the speakers and the hotel who made the event such a sucessThe talks were very informative, the venue was great and the food was smashing! We had information leaflets (Vasculitis Foundation) on the individual diseases, information booklets on benefits, and services for carers, free samples of Sinus Rinse Starter kits from Neil Med, an information stand on research in Ireland (manned by Valerie Logan), and Christmas cards (some kindly donated by Vasculitis UK) and calanders for sale. We also had a short survey for people to fill in to give an indication of how long before getting a firm diagnosis and how many GP/Consultant/Healthcare Professional visits did it take. This is to provide firm data to support our bid for Specialised clinics. This will be rolled out to all members in the near future. 

I’m attaching notes of the talks given and a photos. I hope they all open ok for you.
We had a good discussion this morning about where VIA is going. We decided to do several things

  • Devise a short brochure to leave in GP surgeries, Clinics and Consultant offices. These should be distributed by members in the area and topped up regularly
  • Seek funding/grants for this, possibly pharmaceutical companies.
  • Raise awareness by using the media, giving our stories, publicising meetings and fundraising events, highlighting need for regional specialised clinics to ensure early diagnosis and prompt appropriate intervention when needed to prevent organ damage.
  • Local Hospital information days, displaying our banner  and giving information about Vasculitis in hospital lobbys. These will be manned by local members. (We did joke about our banner becoming […]
By |April 23rd, 2014|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