Disponible en / Available in: Español
In this new informative capsule, we talk about the importance of acceptance of the Cystic Fibrosis diagnose by parents and the family in general.
How the diagnosis fits within the family
The diagnosis of Cystic Fibrosis, like that of any serious disease, is difficult to adjust to within a family. The impact of the news affects not only the parents, but the whole family. The acceptance of the disease will be key in the development of the child who has it, so the family must go through its particular mourning and accept the new reality as soon as possible.
Denial is usually the first phase
The diagnosis of Cystic Fibrosis, like that of any serious disease, is difficult to adjust to within a family. The impact of the news affects not only the parents, but the whole family.
Acceptance of the disease will be key in the development of the child who has it, so the family must go through their particular mourning and accept the new reality as soon as possible.
Pilar Amate tells us about her family’s experience when, 6 years ago, her nephew Joan was diagnosed. At first, denial invaded her thoughts: “Why Joan? It’s not possible for this to happen to us. They must have made a mistake.
The fact that it is a genetic disease can provoke a feeling of guilt, since the parents do not have the disease but their son or daughter does.
One of the biggest mistakes is to search for the disease on the Internet, as the information found may not be up to date and may lead to misconceptions.
Pilar tells us that she was impressed by the words “genetic, incurable, degenerative disease with a limited life expectancy…”.
The role of the Association
After the diagnosis, and following the pediatrician’s recommendations, Ana and Joan approached the Association with Joanet to become members and receive all the information and services they needed.
With some skepticism, due to the news in the news of third sector entities of dubious ethics, the family wanted to participate in a process of reception in which they could be informed through the Association of all aspects of the disease.
Fifteen people from the family came: grandparents, aunts and uncles, cousins, etc. Pilar tells us that all the skepticism they had and some ideas they had formed, such as that Joanet would have to live in a bubble, dissipated after that visit to the Association.
Adaptation to the new rules
Another important point is how to adapt to the rules imposed by the parents when relating to the child with Cystic Fibrosis.
Friction may arise from not understanding why the child cannot be hugged or kissed on certain occasions, or why masks must be worn if the child has an infection, etc., so it is extremely important that the whole family understands and accepts the obligations imposed by the disease.
A great future ahead
After 6 years, Pilar recognizes that the disease has brought them closer as a family and they see the future with much optimism with the new drug Kaftrio, which Joanet is already taking.