L IVING WITH A DBA When born with a DBA, you must not take the wrong fight. You do not fight the disease to fight against it and kill it! You must fight to dominate it, tame it and thus submit to our will to live properly.

P ART 1: THE ANNOUNCEMENT OF THE DISEASE From diagnosis to integration in daily life: the impact of the disease for everyone in the familial sphere. - Sudden shock -trauma - stunning -disillusionnement But when the name of the disease is given and the treatments it’s a relief.

T HEN THE PARENTS NEED TO : Accept the news Integrate the disease To put back in order what had been shattered by the annoucement of the disease. This reconstruction is essential to find a family balance and to project the child in the future. The help of psychologists

P ART 2: T HE IMPACT OF THE DISEASE ON THE PATIENT From infancy to adulthood

D URING EARLY CHILDHOOD (0-3 YEARS OLD ) a disease for which medical care and hospitalizations are predominant in early childhood For young children, this could trigger a feeling of anxiety and insecurity This can cause a disturbance in the construction of the child’s identity For these reasons, it is very important to accept very quickly the idea that it is only the child’s health that is affected, not his capacity to grow up as an individual.

A T SCHOOL AGE (3-12 YEARS OLD ) During this time the diagnosis is made and treatment are generally well integrated into everyday life A child carrying a DBA will therefore be able to attend a mainstream school During this period, it is essential for the child to have tamed his illness, and to have learned to be autonomous in taking his medicine.

D URING ADOLESCENCE (12-18 YEARS OLD ) it is a period of great physical, mental and emotional upheavals, and rejection of parental authority for everyone. if the disease has not been incorporated as part of his being, if treatments are still managed by the parents, it will produce a rejection and thus endanger him through the non-compliance to the treatment.

But: - if the child has made it a part of himself, he will not reject it and divert his teenage crisis to other parameters - This can also prevent the rejection of oneself - This could lead to an abandonment of his construction and could result in a refusal to grow and a rejection of adult life

I N ADULTHOOD There is an important reality: it is not because someone is affected by a disease that he/she will miss out on the joys (thankfully), but also the misfortunes that life sends to everyone. If the disease and treatment have been integrated, there shall not be any obstacle, and therefore, life will be lived as it should be.

A ND W ITH A DBA IT ’ S POSSIBLE TO : - Work - Love - Travel - parenthood - get old

C ONCLUSION A child born with a DBA is a person before being a patient, and is therefore unique. So everything must be done to highlight his personality, his tastes, his good points, his flaws even if he remains and will always remain an extra... ordinary person. Life does not end with the arrival of the disease. It must and will continue differently. And it’s your role, as doctors, researchers, parents, and as patients to make this difference an extraordinary human adventure, and to ensure that the disease will not be seen as a disaster but as a force, a chance to see life differently....

B IBLIOGRAPHY : - Libby PURVES, "How not to be a perfect family", Publisher: POCKET - Boris CYRULNIK "A wonderful misfortune" collection: Psychology, Publisher: Odile Jacob pocket. - Catherine GRAINDORGE, "Understanding the sick child, the trauma to psychic restoration", Publisher: DUNOD -Odile DELORME, "Be patient and learn," collection: Understanding person, Publisher: Chronicle Social. - Sarra MOUGEL "At the bedside of the sick child: Parent / Professional, a partnership model" collection: Societal, Publisher: Armand Colin - Marcela GARGIULO and Martine SALVADOR, "Living with a genetic disease," Publisher: Albin Michel - COLLECTIVE led by Claudie BERT "Siblings proof of disability" collection: Knowledge of diversity, Publisher: ERES