Our annual Alpha-1 patient meeting for 2010 was held on the 8th of October in Marino Institute of Education on Griffith Avenue in Dublin. It was a great success with numerous speakers, a question and answer session with Professor McElvaney, a patient support group meeting and a relaxation workshop.
Updates of the meeting have been sent in the post by Kitty and copies of the presentations are available below.
Our first speaker was Margaret Webb, CEO of Debra Ireland who discussed rare diseases and the importance of a national strategy for rare diseases. This was an illuminating talk, with Margaret keen to stress that newly diagnosed Alpha-1 patients should not feel isolated as over 150,000 people in Ireland suffer from some type of rare disease. Dr. Tomás Carroll followed with a discussion on Alpha-1 and its prevalence in Ireland. Research completed by the McElvaney group in Beaumont Hospital has shown that Alpha-1 is twice as prevalent as previously estimated, with 1 in 24 Irish individuals carriers for the Z mutation, which causes >98% of all cases of Alpha-1. This is one of the highest rates of Alpha-1 in Europe. Dr. Carroll also discussed the targeted detection programme for Alpha-1 which involves the majority of Irish Hospitals and how testing for Alpha-1 Deficiency is performed. Professor McElvaney followed up Dr. Carroll’s presentation with a lively question and answer sessions with plenty of questions provided by the Alpha-1 patients themselves. These questions covered the different Alpha-1 genes, genetic inheritance, disease symptoms and possible treatments.
Two further presentations were given before lunch changing the focus of the meeting to patient entitlements. Elaine Bradley from the revenue online service (ROS) spoke about tax entitlements for chronic illness. Elaine then detailed what a patient can claim for including service of a practitioner, diagnostic procedures, supply of drugs and medical appliances, and nursing home fees. These claims can be made via the Med1 form or if the claim is for dental work the Med2 form. Self-employed people use Form 11. These forms are available on the following website: http://www.revenue.ie/en/tax/it/leaflets/it6.html
The final talk before lunch was from Cristina Santamaria from Northside Citizen Information. She explained that her office was just one of 42 citizen information services located throughout the country. Their role is to provide appropriate information, advice and advocacy services for the needs of the local citizen. The majority of queries they deal with are related to social welfare and the health service. Cristina went through social welfare benefits which may be relevant for Alpha-1 patients such as illness benefit, invalidity pension, carer’s benefit, medical cards and the drug payment scheme. For any further help and advice on any of these benefits you can visit their website http://www.citizensinformation.ie/ or Lo-call 1890 777 121.To find your local service please see http://centres.citizensinformation.ie/.
After lunch there was a patient support group meeting more of which is discussed in the patient support group section. The final presentation of the day was on stress management and relaxation techniques. In this workshop Michelle McGettigan and Olive Gibson from the Health Promotion Unit in Beaumont Hospital described to a captive audience what exactly stress is, how it can be managed, and more importantly how we can eliminate it from our lives. One of these techniques was a 20 minute meditation period that everyone participated in leaving us all relaxed and revived for the journey home.
Thanks again to everyone who attended,
The Alpha One Foundation.