Latest News

Love your Lungs

 Love your Lungs Campaign

On Monday the 13th of February a group of Irish charities have teamed up with Olympic Champion Dr Ronnie Delany to promote healthy lungs by highlighting symptoms of lung disease and the importance of early intervention.  The Irish Lung Health Alliance includes:

  • Irish Thoracic Society
  • Cystic Fibrosis Association of Ireland
  • Irish Lung Fibrosis Association
  • Ben Bulben COPD Support Group
  • Irish Sleep Apnoea Trust
  • Asthma Society of Ireland
  • the Irish Cancer Society
  • Irish Sarcoidosis Network

 

The Love your Lungs campaign carries four simple messages:
1. Lung disease can affect anyone regardless of age, health status and walk of life
2. Symptoms such as persistent cough and shortness of breath are not normal and should be checked with your GP
3. Lung disease is treatable – the earlier you treat the better.
4. Keep lungs healthy - don’t smoke and stay active


The ‘Love Your Lungs’ campaign will see the charities working with medical centres throughout the country to offer free lung function tests for World Spirometry Day taking place in June this year.  It also incorporates a new website, www.lunghealth.ie, offering helpful information and advice regarding common lung conditions as well as patient support and tips on how to keep your lungs healthy.  The website will be updated regularly with details on participating centres over the coming months.

‘One in five deaths in Ireland is caused by lung disease.  It is the most common reason to visit a GP and the third most common reason for acute hospital admission.  Yet early diagnosis of lung disease, which can vastly improve outcomes and quality of life for patients, continues to be a challenge due to poor awareness levels.  The fact is, shortness of breath, cough and wheeze are not normal and if present should be checked out by your GP,’ said Dr Edward McKone, Consultant Respiratory Physician and President of the Irish Thoracic Society.


‘The campaign also aims to highlight the fact that lung disease affects people of all ages, all socio-economic backgrounds and many non-smokers as well as smokers.  ‘The range of conditions represented by The Lung Health Alliance charities is evidence of the broad-reaching nature of lung disease as they affect everyone from infants to senior citizens.  In fact lung disease is the most prevalent condition reported in young adults (18-24 years of age),’ said Dr McKone.

Olympic legend Dr Ronnie Delany is an ambassador for the campaign underlining the importance of healthy lungs to an active lifestyle and visa versa.  As an Olympic Gold Medallist and the winner of an unprecedented and unsurpassed 40 straight victories “indoors” in America from 1956 to 1959 including 33 mile races,  Dr Delany embodies the link between good lung function and athleticism.


 “We know only too well how dependent athletes are on good lung function. What’s probably less well known is the reverse – the role that sport and physical activity can play in preventing lung disease and in improving quality of life for people with lung conditions. It’s therefore very fitting that the Irish Lung Health Alliance and the World Spirometry Day Campaign have chosen this Olympics year to launch their campaign, said Dr Delany”

 
 

Useful Links

Useful Links

General Information Alpha-1 Websites

Alpha-1 Association (USA)
Informative website with excellent information in plain English and downloadable resources for the newly-diagnosed Alpha.

Alpha-1 Foundation (USA)
Link to the US Alpha-1 patient website, very useful and informative.

What is Alpha-1 Antitrypsin Deficiency? (USA)
Link to a good overview of Alpha -1 by the National Heart and Lung Institute (USA).

AlphaNet (USA)
US website provided and maintained by Alpha-1 patients for Alpha-1 patients.

Alpha-1 Awareness (UK)
Patient website maintained by the UK Alpha-1 Awareness Group.

Alpha-1 Kids (USA)
Very helpful website for parents of newly diagnosed children with Alpha-1.

Children with Alpha-1 Antitrypsin Deficiency Liver Disease
Stories from families with children diagnosed with the liver disease caused by Alpha-1.

University of Florida Alpha-1 program
A link to the University of Florida Alpha-1 program which describes the many screening and research initiatives.

BBC Health Alpha-1 Antitrypsin Deficiency
Excellent website, easy to understand, and very informative.

Alpha One Foundation Suite Opening
Link to the Department of Health and Children website and to the Minister’s speech at the opening of the Alpha One Suite in Beaumont Hospital, April 2004.

Lab Tests Online
Information about Alpha-1 and how it is diagnosed.

Smoking Cessation Websites

Quit.ie
1 in every 2 smokers will die of a tobacco related disease. Can you live with that?

Excellent website on all aspects of quitting smoking.

Action on Smoking and Health (ASH)
ASH Ireland is focused on reducing the impact of tobacco use in Irish Society.

Give Up Smoking
HSE website dedicated to smoking cessation.
 
Office of Tobacco Control
The control and regulation of tobacco products.

Patient Groups, Charities, and Health Professional Websites

Living with COPD
Website describing COPD, what it is, how it is diagnosed and treated, available supports and simple steps to ease symptoms and improve quality of life. 

COPD – It’s breathtaking
More information about COPD symptoms and diagnosis. 

COPD Support Group
Detailed Irish website about COPD maintained by a COPD patient Michael McGloin.

Mayo COPD Support Group
Informative website for Mayo COPD sufferers.

Respiratory Nurses Association of Ireland
Website of the Respiratory Nurses Association of Ireland.

Asthma Society of Ireland
Website for the Asthma Society of Ireland.  

Medical Research Charities Group
Website of the Medical Research Charities Group, an umbrella group of medical research and patient support charities.

Irish Platform for Patients’ Organisations, Science, and Industry (IPPOSI)
Website of the Irish Platform for Patients’ Organisations, Science, and Industry, which seeks to foster close links between Patients, Clinicians, Academic Scientists, Industry, Regulators, Policy Makers, and is recognised by the Department of Health.
 
Genetic and Rare Disorders Organisation (GRDO)
The Genetic and Rare Disorders Organisation (GRDO) is a non-governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders.

Institute of Public Health in Ireland (IPH)
The Institute of Public Health in Ireland (IPH) promotes cooperation for public health between Northern Ireland and the Republic of Ireland.  IPH was established in 1998 and has offices in Belfast and Dublin.

European Organisation for Rare Diseases (EURORDIS)
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.

EuroplanIreland                                                                                                                                                                                                                              A joint action for National Strategies and Plans for Rare Diseases in all EU Member states The main goal is to establish a national stratagy for rare diseases withing each member state.

Health Service Executive
The Health Service Executive (HSE) is responsible for providing Health and Personal Social Services for everyone living in the Republic of Ireland.

Articles on Alpha-1 in National and Local Media

Irish Times Interview with Alpha-1 Patient in April 2009
Excellent interview with Alpha-1 patient about her condition and the positive outlook she maintains.  

Irish Medical Times Alpha-1 Article on Alpha-1 Awareness
Article on Alpha-1 and the low awareness of the condition among GPs.

Derry Journal Alpha-1 Patient Interview
Link to Derry Journal newspaper article about an Alpha-1 patient John Hannan and his horse-ride from Mizen Head to Malin Head to raise awareness about the condition.

Genetics Explained

http://www.dnaftb.org/dnaftb/
This is an animated site describing the basics of DNA, genes, and heredity.  Key concepts of genetics are explained using animation, image galleries and video interviews. Kept at a basic level but impressively done nonetheless.

http://www.innerbody.com/
Educational site detailing the anatomy of the human body.

http://www.chg.duke.edu/education/glossary.html#inherited
Excellent website from Duke University with simple explanations for common genetic words and phrases.

Oxygen products

Air Products
Information on oxygen supplier information and contact details for tourists and people travelling overseas.