Even with the end of the July holidays and the children returning to school after a period of rest and fun, the concern of parents of children with hemophilia remains.
The survey “Picture of Hemophilia in Brazil”, conducted by Editora Abril with support from Pharmaceuticals Roche and the Brazilian Confederation of Hemophilia, interviewed parents and caregivers of children and adolescents with severe and moderate hemophilia A, 72% of whom were enrolled in education. Institutions – from kindergarten to primary school – have achieved important results on the insecurities and barriers that still face this community.
Among outcomes related to academic life, 57% reported that their children had already had to miss school due to a hemophilia-related issue, which affects school attendance and teaching quality. In addition, only 4% said that the school has a professional who has received special training to monitor and assist the child in case of need, while 96% do not receive such support in the school environment, which can cause fear and anxiety.
Among other findings, 71% state that limiting play and living with other children is a barrier that is still very present in their daily lives and 60% would like the child to have more freedom for physical exercise, play, travel and more. activities, but fear bleeding, which may lead to serious comorbidities in the long term, impairing the quality of life of those living with the disease.
Preventive treatment options have brought more safety to the hemophilia community, but 46% of respondents indicated that solutions to prevent bleeding needed to be significantly improved. Science has committed itself to finding more accessible, convenient, and effective options to provide children and their families with greater freedom and quality of life. Recently, promising therapies have been developed, such as long-acting subcutaneous therapy, which provides greater comfort to patients and requires one weekly application depending on the case.
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