Report from Alpha-1 Patient Conference 2010

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.

Annual Alpha-1 Patient Meeting 2009

The annual Alpha-1 patient meeting will be held on Saturday 10th October at 10.30am in Marino Institute of Education on Griffith Avenue, Dublin 9. All Alpha-1 patients and their families are invited to attend this forum. Invited speakers will be discussing issues relevant to Alpha-1 patients, including disease management, current research, and ongoing clinical trials in Beaumont Hospital.

 Alpha-1 affects the lungs and liver, causing emphysema in the lungs and cirrhosis of the liver. These can be life threatening conditions in both adults and children. Recent research from our group has shown that over 2,100 Irish people have severe Alpha-1, which is usually undiagnosed or misdiagnosed as something else e.g. chronic obstructive pulmonary disease (COPD) or asthma.

•    It is vital to highlight that Alpha-1 is not a rare disease, but a disease that is rarely diagnosed.
•    Our national targeted detection programme screens all COPD, asthma, liver disease patients and relatives of Alphas. Early diagnosis is essential. We show Alpha-1 individuals diagnosed early have fewer symptoms and significantly better lung function.
•    The Foundation’s research demonstrates a much higher incidence of Alpha-1 in Ireland than previously thought, with over 2,100 individuals at risk of developing severe disease.
•    In addition we have shown there are over 200,000 Alpha-1 carriers in Ireland who possess one copy of the harmful gene.  These patients are also at increased risk of developing emphysema, particularly if they smoke.
•    Identification of patients from a targeted detection programme should include aggressive family screening and allow the initiation of preventative measures before significant lung disease has occurred.

Prof. Gerry McElvaney, Professor of Medicine RCSI and consultant respiratory physician in Beaumont Hospital states;
“Our research and experience with Alpha-1 patients and other respiratory diseases point to the fact that there is a great need for a National Respiratory Strategy to co-ordinate the proper diagnosis and treatment of Alpha-1 and other respiratory conditions. Our studies clearly show it is vital for the health and welfare of our patients that they are diagnosed as early as possible, before they develop symptoms.”

For further information contact: Kitty O’Connor, CEO Alpha One Foundation on 01-8093871 or This email address is being protected from spambots. You need JavaScript enabled to view it..

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