VIA

About Julie Power

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So far Julie Power has created 9 blog entries.

First NI Vasculitis Conference, 24th May 2015, Burrendale hotel, Newcastle

  •  Vasculitis Ireland Awareness support group to date, by Julie Power
  • Vasculitis the basics, by Dr Dearbhla Kelly, Specialist Vasculitis Clinic, St James’ Hospital, Dublin
  • ‘How we can help ourselves’, Self Help and Symptom Management groups available in NI, by Tricia Bowers Arthritis Care
  • ‘How to get the most from our appointments and help ourselves’- Kieran Brogan, Patient Advocate, Peer Support Worker  
  • Pain Management, Patricia Mc Crystal, Chartered Counselling Psychologist- Specialist in Persistent Pain, Southern  Health and Social Care Trust
  •  ‘Renal Patient View and the Importance of Registries’ Dr Damian Fogarty, Consultant Nephrologist Belfast Health and Social Care Trust with special interest in research.
  • Dr Carolyn Harper, Executive Medical Director/ Director of Public Health – HSC- Public Health Agency, Informal Talk about Commissioning and then discussion about what would make the biggest difference for people in managing their condition.

In the months following this last talk, meetings were held to assess possibility of setting up a tertiary Vasculitis service that would avoid crisis management by having people experiencing difficulties referred by their Rheumatologist/Nephrologist/Immunologist to a specific team, who would recommend appropriate care and if necessary see the person. This service was agreed, along with plans to provide education re vasculitis to the healthcare professionals via an online system. However, due to staffing difficulties and delays in setting up the eReferral system, this is still not operational. Watch this space for updates.

 

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

New Vasculitis Patient buddy app being developed

We are at the exciting stage of designing a new app with PatientmPower, Clinicians and researchers in Trinity Kidney Research and  Vasculitis UK. This app will be used to help us manage our symptoms, record our health over time and hopefully help us identify triggers which cause flares. It is at the very early stages of development and is currently at design and trial stage.

It is anticipated that it will record

  • Activity levels (walking, running, cycling)
  • Medication usage & self reported adherence
  • Wellbeing through ePRO (EQ-5D)
  • Health Journals / symptom journals
  • Home Diagnostics data (e.g. Blood pressure & weight)
  • Location data

The last item will be correlated against other data sets, e.g. weather, air quality, notifiable diseases etc to help determine environmental effects on our condition.

For more information contact eamonn@patientmpower.com

 

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

National Scleroderma and UK & Ireland Vasculitis Meeting, Venue Clarion Hotel, Cork City Wednesday December 7th 2016

We were fortunate to have 4 members attend this meeting, Patricia Ryan, Seamus Beausang, Ann O’ Brien and myself. The meeting on Wednesday was very detailed and intense and the following is a synopsis of the content.

Evolving spectrum of Scleroderma morbidity and mortality – Dr Bernie Lynch, Galway University Hospital talk of Royal Free Scleroderma group for information and latest research showing that posterior tibial nerve stimulation may help in the symptoms of faecal incontinence.
[…]

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

World Orphan Drug Congress

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

On 15th November, I travelled to Brussels to represent Vasculitis Ireland Awareness at the 7th 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 |February 21st, 2017|Categories: Uncategorized||0 Comments

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 on April 10th. 

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

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