Rare Diseases Lead Hospitalizations at HC Child and Adolescent Institute
A new survey carried out by doctor Cristina Grassiotto, pediatrician coordinator of the Infirmary of the Institute for Children and Adolescents at the Hospital das Clínicas of the Faculty of Medicine of USP, and by Magda Carneiro Sampaio, president of the boards of directors of the Institute for Children and Adolescents and the Integrated Center for Genetic Diseases (Cigen), showed that 60% of hospital admissions are caused by rare diseases.
According to the WHO, diseases that affect up to 1.3 in every 2 thousand people are considered rare. Magda explains that the majority of rare diseases occur due to genetic predisposition: “The majority of rare diseases, around 80%, are of genetic origin and it is estimated that 75% already appear in childhood. So that’s right, the pediatrician is the doctor who really cares and who should suspect and diagnose rare diseases.”
Hospitalizations and transplants
The survey was carried out between January 29th and February 2nd. During this period, 128 children and adolescents admitted to the institute were observed and, of these, 77 had rare diseases as the main cause of hospitalization. Cristina explains that these hospitalizations occurred mainly for rare cancers: “We had a predominance of children who had rare cancers. In addition to these, the groups that stand out include children who undergo liver and kidney transplants”.
Another important cause of hospitalization at the institute is congenital malformations, which lead to newborns needing intensive therapy and, often, undergoing surgical procedures.
Regain your perspective on life
Transplants are quite complex and invasive procedures, which are terribly scary for a child. However, as the experts explain, the result is positive: “The pre-transplant clinical situation is more serious and more critical. Although these are very invasive procedures, children have a much better outlook and quality of life after the transplant”, says Magda.
“And the institute fully monitors this child, from hospitalization to transplant or treatment, and then the children are monitored for their entire lives. Within the Children’s Institute until the age of 18, and then continues with clinicians, with adult doctors,” he concludes.