The 1st Cardiology Symposium on Thalassaemia that took place on 17-18 June 2017 in Thessaloniki Greece concluded in great success. The programme was divided into a doctors’ scientific group of sessions to which patients were able το participate and a Capacity-Building group of sessions offered exclusively to patients.
Mr Panos Englezos, President of TIF Board of Directors and the Founder of the Thalassaemia International Federation, through Dr Androulla Eleftheriou, discussed the advances of the last decades highlighting the ways in which these advances marked a significant increase in patients’ survival and improved patients’ quality of life. The role of patient and parents’ organisations such as TIF in supporting this progress has been defining. Find the whole speech (in Greek) at http://learnabouthealthnow.blogspot.com.cy/. New advances were also presented such as the Mobile Echo now available in Greece seeking to alleviate thalassaemia patients from the cost of having to attend a cardiology check and increase access to this test.
Doctors stressed that cardiac failure in thalassaemia is manageable and completely reversible. In the past, heart failure was the main cause of death for thalassaemia patients. Back then, its manifestation was entirely different from what it is today. There are many facets of cardiac failure in thalassaemia but also effective ways to confront them. It is important to highlight that most forms of cardiac failure in thalassaemia are reversible using latest treatment options available such as iron chelation and monitoring tools such as ECG, MRI-T2* and others. Doctors advise regular monitoring of the heart function starting in childhood!
Very importantly, specialists stressed the value of multidisciplinary care in thalassaemia: “Effective treatment and care is based on teamwork, not individual doctors. Multidisciplinary teams hold the most promise for finding and providing the best possible treatment for patients”.
From the first Cardiology Symposium, patients shared their take home messages with us:
- Cardiac failure is fully manageable and totally reversible
- Adhere to iron chelation treatment to achieve longer survival and better quality of life
- Need to have a specialist cardiologist as part of multidisciplinary team for best care
- Holistic and personalised care is essential to fit the specific and different needs of each individual patient
Education is power! TIF 2.0 and Educational e-Platform for patients
In the second part of the symposium, the patients were introduced and enjoyed a hands-on experience with Module 1 of TIF’s first electronic platform on an especially dedicated electronic space.
The answer is YES! Attend conferences, take courses, learn about the disorder and the ways it can be effectively treated and managed. Learn about the choices you have. Learn accurately, learn directly from the experts themselves, learn at the online.
TIF electronic platform with three e-Modules offering a comprehensive well-rounded knowledge of Thalassaemia aspects that patients need to know will be launched at the end of the year.