2º INTERNATIONAL DIGITAL MEETING FOR PEOPLE WITH THALASSEMIA
It happened on the 14th of May | 2022
twelve o’clock – 12PM – 4PM | New York
- Brasil – 13:00 hrs as 17:00 hrs
- London – 5PM – 9PM
- Ottawa – twelve o’clock – 4PM
- Buenos Aires – 1PM – 5PM
- India (standard time) – 9PM – 1AM
- Pakistan – 9PM – 1AM
- Bangaladesh – 10PM – 2AM
- Greece – 7PM – 11PM
- Trindade e Tobago – twelve o’clock – 4PM
- Spain – 6PM -10PM
- Malásia – midnight – 4AM
- México – 11AM – 3PM
Check out the 2nd International Meeting for People with Thalassemia impressions!
The 2nd International Meeting for People with Thalassemia took place on may 14, an event organized by Abrasta in partnership with TIF (Thalassaemia International Federation).
During the four hour event over a 100 participants from 43 different countries, such as Brazil, Canada, United States, Greece, Italy, Iran, Nepal, Pakistan and Uganda exchanged knowledge and information about living with thalassemia.
Several topics were discussed in three separate rooms, with simultaneous translation to portuguese, spanish and english, such as:
Room 1 – Parens
Moderation: Bessie Calabria, Jeehan Saleem and Adriana Feldman
- Fear of loss: how to cope with the fear of losing a child
- Challenges related to blood transfusion
- Treatment adherence
- Therapeutic advances and innovations based on where the person lives
- Children’s independence
Room 2 – 14 to 26 years old
Moderation: Michele Abi Saad and Josephine Bila
- Transition to adulthood: starting college, moving to another city, transferring treatment, travel and exchange programs
- Mental health and well-being
- Relationship, sexuality and fertility
- Exercise and nutrition
- Treatment adherence and the importance of chelation therapy
Room 3 – 27+ years old
Moderation: Ayesha Mehmood, Elisangela Tibet, Chris Sotirelis and Eliana Saba
- Comprehensive care: from pediatric to adult
- Financial impact and burden
- Secondary diseases
- Patient rights
- Education and resources: be and expert in your own care
- Job market
One of the highlights of the conversations between thalassemia patients were the questions related to long-term medications and how it differs in each country. The participants also talked about how thalassemia affects their lives, not only when it comes to physical health, but also regarding their social relationships. Moreover, the participants were interested in the different ways in which each culture sees and copes with chronic illnesses.
In the room for patients over 27 years old, one of the highlights was the discussion about gene therapy, one of the possible cures for thalassemia. The lack of government support so that the patients have access to the best treatments and a better quality of life was also debated.
In the parents room, a mother told the participants how she carefully monitors her young child’s development through a chart that offers a monthly hemoglobin control and the treatment given by their doctor, which was seen as an example to other mothers on actively participating in their child’s care.
To wrap up the event, the patients had the opportunity to watch a short lecture by Monja Coen on the meaning of life and on exercise tips on conscious breathing.
Talent show for people with thalassemia
During the meeting, videos of thalassemia patients were displayed and their talents brightened the event, such as artistic, cooking and sports skills.
The 1st, 2nd and 3rd place winners will be chosen based on the number of interactions on their videos, so just access the playlist on Abrasta’s YouTube channel and watch, like and comment on your favorite one!
Access the playlist through the link – Link da playlist: https://www.youtube.com/watch?v=iW4QV-288ao&list=PL_bJ_Hja5GAE1ojmiX_lOOskTxq-g-tsD