Vasculitis Ireland Awareness

World Orphan Drug Congress

World Orphan Drug Congress, Brussels, 15^th-17^th November 2016

On 15^th November, I travelled to Brussels to represent Vasculitis Ireland Awareness at the 7^th World Orphan Drug Congress in Europe. I secured a free place along with a colleague from the Northern Ireland Rare Disease partnership (James Cauldwell, Rare Cancers support group) and we travelled together to find out more about this area and how we as patient groups could expedite access to these important medications.

Perhaps at this stage it would be good to define Orphan drugs – according to European Medicines Agency they are ‘for the diagnosis, prevention, or treatment of a life threatening or chronically debilitation condition that is rare (affecting not more than 5 in 10,000 people in European Union) or where the medicine is unlikely to generate sufficient profit to justify research and development costs. […]

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

Permalink Gallery
Cork Coffee and chat meeting, December 6th 2016

Uncategorized

Cork Coffee and chat meeting, December 6th 2016

Coffee and Chat in Cork, 6^th 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 Julie Power|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 Julie Power|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 Julie Power|February 21st, 2017|Categories: Uncategorized||1 Comment

Birth Announcement Sophia Rose Sproule

I’m delighted to share with you the wonderful news that my daughter was born on the 22nd of July.

For us, she truly is a little miracle that we never thought possible.

I was diagnosed with Microscopic Polyangiitis in 2005 at 18 years old. Despite being in medication to suppress the illness, I ended up on life support in 2006 after suffering a pulmonary haemorrhage. During this time, I received (among other things!) a number of courses of cyclophosphamide. Upon pulling through, I was told that my ability to have children was likely to be badly compromised.

Thankfully, after years of being carefully managed by Mark Little, I was advised that I should try so I weaned off my medication over a few months as my disease had been stable for a couple of years.

My husband and I were delighted to fall pregnant. Unfortunately, we suffered a miscarriage very early on which was devastating. However we were absolutely over the moon to quickly fall pregnant again with our beautiful daughter.

Throughout the pregnancy, I was seen every two weeks at the Ulster Hospital by both the antenatal team and the renal team with input from the Haematology team.

I cannot praise the level of care received enough! Although no one had dealt with someone with my illness before, I was handled with care and with confidence.

If you are in a similar situation, and perhaps have been told or believe you may find it difficult to have children, please talk to your consultant – and don’t give up hope!

By Julie Power|October 6th, 2016|Categories: Our Members||0 Comments

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 Julie Power|August 22nd, 2016|Categories: Uncategorized||0 Comments

VIA

About Julie Power