Patient Support Group
Delegate Report from the 4th International Alpha-1 Patient Congress 2013
The 4th International Alpha-1 Patient Congress and International Research Conference on Alpha-1 Antitrypsin Deficiency took place in Barcelona in April this year.
We were privileged to be asked to attend as country delegate and patient representing the Alpha One Foundation in Ireland. This gave us the opportunity to mingle with patients, doctors and scientists with expertise in Alpha-1 Antitrypsin Deficiency. The Research Conference focussed on Alpha-1-related liver disease and invited expert scientists from some 20 countries worldwide to update and discuss their ongoing research. It was evident that much research is taking place in each country and the conference offered us the opportunity to hear about observations and findings through the various country representatives. In future, the conference will act as a forum for the exchange of ideas between researchers worldwide.
Fourth International Alpha-1 Congress
As you are already aware, 2013 is the year in which the Alpha One Foundation celebrates 50 years since the discovery of Alpha-1 by scientist Sten Eriksson who was also present at the conference. Over the two days, we heard about the research carried out since its discovery and had some valuable feedback and perspective from patients on the various interventions and treatments they have undergone and the benefits they have derived from them. It was also clear that the Patient Groups in each country shared common goals and each had five key objectives, namely: 1. Raising Awareness, 2. Support and Information for Patients and Families, 3. Augmentation Therapy (clinical trial results and lobbying), 4. Early Diagnosis of Alpha-1, and 5. Scientific Research
For the purposes of this report, we would like to share with you a number of topics or messages that particularly resonated with us during the conference, namely Augmentation Therapy, Registries, and Alpha - Self Care.
Augmentation or Replacement Therapy: Consists of weekly infusions of a human plasma based product. In the United States replacement therapy became available in 1986 following small limited research studies. The biochemical efficacy of replacement therapy is still being investigated by European countries. It was also reassuring to learn that there are many more therapies being researched including Gene Therapy, Gene Correction, Cell Therapy and Inhaled and Intravenous Replacement therapy.
Registries: The challenge facing the Alpha One Foundation is to gather data to support the effectiveness of this expensive therapy and to lobby the various country Health representatives to gain support for the treatment. This is an on-going process. Trials and studies are taking place but take time. Countries also need to build up their registries of Alphas to be able to provide data on numbers of Alphas and demonstrate the occurrence of the disease within each country. Alpha One Foundation in Ireland is doing well in this area and has specifically targeted health providers to educate them on the importance of testing patients presenting with certain symptoms and in addition have encouraged Alphas to have family members tested which has added considerably to the registry.
Alpha – Self Care: Doctors at the conference provide some practical advice around patient self-care and nutrition. One of the key messages to all Alpha patients who currently smoke or passively smoke was to quit smoking and ensure that your living environment is free from smoke. They also highlighted the importance of exercise to maintain fitness and muscle strength and conditioning. This in turn contributes to improved breathing, positive mental health and quality of life.
We were also inspired by Dr. Fedon Lindberg’s talk on nutrition. He advocates the Mediterranean diet which is rich in vegetables, fruit, beans, nuts, seeds, healthy fats such as olive oil and low in salt and sugar (the main culprits which cause inflammation in the body).
We hope this short report serves to provide you with a brief insight into the conference this year. This conference was a wonderful opportunity for patients, doctors and scientists to come together to share first hand health experiences, observations, expertise and research about a disease close to their hearts and was a very definite step closer to achieving our common goal to discover a cure for Alpha-1 Antitrypsin Deficiency.
Report by: Fidelma Furey (Country Delegate), Martin Furey (Alpha-1 Patient). Also attended by Orla Keane and Josephine McGuirk (Alpha-1 patients).
Flora Women's Mini Marathon
Congratulations to all the ladies who took part in this year’s Flora Women’s Mini Marathon on the June Bank Holiday weekend. We are very grateful for every fundraising effort which helps us to continue our national screening programme for Alpha-1.
All fundraising events are much appreciated and we are happy to help you organise any event in your own local area.
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