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), in the urine has been identified as being raised when disease is active. Being able to use this will determine if disease is active (and it is not an infection) and treatment needs to be started. The research team awaits the authorization of a test stick for this protein (Glomstix). We also await authorization of a new research method called Leukopharesis stem cell donation, which will allow synthesis of the vasculitis disease.
David Edgar, Consultant Immunologist, Royal Victoria Hospital, Belfast, spoke about a new proposal for a Vasculitis Network in NI. This would mean a more co ordinated approach to treating people with Vasculitis and allow sharing of information amongst the healthcare professionals. This would lead to the development of protocols of care and sharing of current information, which will benefit us all. The first meeting should happen in November, with Eamonn and Mark giving presentations. This could roll out to all Ireland in the future.
We broke at this stage and met for an excellent buffet dinner at 7pm followed by ‘Orange Juice” and Craic. This was a great opportunity to mix, share stories and have fun. We even came up with an idea to have an exhibition of our talents, photography, art, gardening, music etc., this will not only be a fun thing to do, be reinforcing of our abilities, but also raise awareness. Please get in touch if you are interested in this venture. We have not produced a calendar this year but may have one next year of members doing what they enjoy.
Sunday began with a short feed back session – we talked about speakers for next year, Pain Physio to advice on exercise, dietitian/ Nutritionist to advice re diet and someone to talk about the stresses of living with a chronic illness and the changes it brings to our lives. We also talked about the difficulties of my being able to travel to regional meetings all the time, so we discussed how to run regional coffee and chat meetings, organised locally.
Representatives from Dun Laoghaire Citizen’s Advice Bureau came along to answer questions on benefits, support services available and medical card entitlement on a one to one basis.
Aoife Synott, Senior Occupational Therapist, Harold’s Cross Hospital, Dublin gave us a very informative talk on Fatigue Management. I’m attaching her power point presentation.
This was followed by a comprehensive talk from Dr Radzi Rodzlan, Tallaght Hospital, Dublin about our blood tests, explaining what they are, why they are important and normal levels. This was followed by a brief video showing the role all our blood cells have in our disease.
The meeting closed at 12noon and we hope to reunite next year, the first weekend in October. I have provisionally booked this in the Royal Marine Hotel again, for the first weekend in October 2015.
On the fundraising side, there are three brave ladies from Wicklow going to do a parachute jump for us- they range in age from 55-74. Check our just giving page at www.justgiving.com/vasculisia for their fundraising page.(might take a few days yet to set up)