Rosilaine Morais Carvalho, 38 years - Mother of Micaella Beatriz, 7 years old, who has major thalassemia
It’s my first time in the Journey and I decided to come and bring Micaella so that she would have contact with other people and know how her generation is privileged for having so many evolutions in the treatment. I wanted to show that other people suffered much more than her, who was diagnosed in the little foot test, made the blood genotyping with five months of age, has no growth deficit...Nowadays, when we see that the genic therapy will maybe be only applied ten years in the future, for an adult it may mean nothing, but for Micaella’s generation it is an important forecast.
Major Thalassemia, Londrina(PR)
Júlio André Rogoski, 51 years - I have an 18-year old son with major thalassemia
I think the way the parents face the disease directly reflects in the stance of the child as to the treatment. While he is more interested in the confraternity and the exchange of experiences with people with thalassemia of the same age, I stay here paying attention to the information on medications and treatment. Events such as the thalassemia journeys help the parents to gain knowledge enough to monitor the activities of the physicians and it gives us a comfort, security that everything is being done as it should
Major Thalassemia,
Juliana Zanatta de Antoni, 25 years
I value the moments of confraternity in these events. With the experiences of other participants, I learn things, and the meetings always help me facing the hindrances during the treatment.
Major Thalassemia,
Simone Guerra, 32 years
I have thalassemia and sickle cell anemia and I found it very interesting the lecture on the complications. To me, it was all news to learn that we have greater risk to develop a thrombosis, especially at this time, because I’m trying to get pregnant
Thalassemia and sickle cell anemia, Campinas (SP)
Josiane Vanguetin, 29 years
I have already participated of several events of ABRASTA, but for me each one is super important, a new opportunity to meet people, clarify doubts, exchange experiences, listen to opinions by physicians, meet new treatments. I really appreciated listening to the lecture on the chelating agents that highlighted Exjade, which is still new and unknown for many patients.
Talassemia Major, Pompéia(SP)
