WHAT DOES IT MEAN LIVING WITH
A GENETIC CONDITION?
A GENETIC CONDITION?
The diagnosis not only impacts the life of the person with the condition; it also that of his or her entire social and family environment
A genetic condition is not always a synonym of disease, this means that it is not curable but treatable, and will be present throughout a person’s life
There are situations of misinformation and lack of empathy
on the part of health professionals, educators, and society in general
More than 50 symposiums and sessions for families are held annually
We offer symposiums and seminars in Latin America and the United States for health professionals on genetic issues
There is permanent medical and therapeutic support
Social discrimination
Social and/or school exclusion. Bullying, which leads to socio-emotional affectations such as low self-esteem, anxiety, depression, etc
High economic demand (medications, therapies, medical examinations, etc.). To get a diagnosis, several high-cost tests and multidisciplinary interventions are required
Lack of equal opportunities: 32% of these children will never be able to live independently and will have problems finding jobs
Relationship conflicts and crises in parent’s marriage: 60% of the parents are separated, sibling ́s problems, stress-related illnesses, depression, anxiety, etc