Challenges for Adhesion to the Treatment
The commitment of the person with thalassemia is the first step to assure a long life
As in every chronic disease, the commitment of the person with thalassemia in following the treatment is the first step to assure not only a long life, but quality as well. The problem is that most people do not easily accept the news of a diagnosis that will require monitoring from an expert and usage of medication for the rest of their lives.In case of thalassemia, this reaction may be even harder, since the treatment includes procedures more invasive than the simple ingestion of a daily pill and, worse, should be included in the routine from the very childhood.
The challenges to assure adhesion to the monthly blood transfusions and to chelation change according to the age of the person with thalassemia, but a frank conversation with the physician, the support of relatives and the search for information that end up with myths, in any stage of life, may help the person with thalassemia to see the advancements that were able to contain a disease that was fatal in the past and thus face more positively the importance of the daily care.
Five stances in view of the disease and useful tips
- When the parents accept the diagnosis of the child and look for information and guidelines with experts on thalassemia, they can face their own prejudices and transmit more security and calmness to the young children. Together, the family faces better the hindrances imposed by the diagnosis, and inclusion of the treatment in the routine usually occurs with no grater trauma;
- Show the children the developments of the treatment of thalassemia and value the fact that, thanks to the blood transfusions and the chelating agents, the person with thalassemia of this new generation may live more and better – without, for example, bone deformities on the face which were very common abnormalities --, it is also a form of encouraging adhesion to the monthly care.
- In adolescence, a phase marked by hormonal revolutions and many questions by the young people, the assistance of a psychologist may be essential – in addition to the support of the parents – to avoid that the person with thalassemia develops emotional problems due to his/her clinical condition and, because of that, interrupts or continues the treatment in a disorderly manner.
- Encourage the active participation of the person with thalassemia in the treatment, whether by learning more of the disease and its reactions in the organism, living with other people with thalassemia or researching on studies that propose new alternatives of interventions and even future cures, may work as a courage injection and favor the search of the people with thalassemia by maintenance of the health and well being. It is also important to encourage the patient to the active participation in its treatment: scheduling exams, schedule of the transfusion, preparation of the drug, application of the drug, among others.
- Debunk the disease and put away any stigma associated with thalassemia – which can be done after a consultation with the expert physician – may encourage the accomplishment of routine and pleasant activities, such as the practice of sports or trips, for example. And it helps the person with thalassemia to forget the "burden" of having a chronic disease and to note that the treatment strictly followed may bring much more pleasure, well being and life quality than trouble.
