How long can you wait until your child, your brother or yourself are diagnosed with a disease? Maybe, if you have a flu, go out with an acetaminophen recipe and the recommendation to drink a lot of water is something immediate, but when the diseases are more complex, more unknown or uncommon the waits are agonizing longer. And not only the waits: The doctors visited, the diagnoses, the hospitals, the links of Google visited… multiply as much as the anguish that grows in the affected ones.
If in something I have coincided with many parents with similar situations (children with a disease or disorder that is not immediate or easily diagnosable), is that having a document that says what your child has, a more or less reliable diagnosis, is a turning point and relief (even when the news are not always good). Then you have the worst of combinations (the certainty that something does not go well with the uncertainty of not knowing what it is) to be certain that something still does not go well, but with a name of a disease or a code of a gene. It does not change anything and changes everything, but they have placed you on track where you are going to run, what can be done, what range of forecasts there are, or which people are in the same situation and can share life experiences. There is the painful and long process of traversing that track, you have not even taken a step in it and often tell you that the path is lost where it reaches the view, but it is right where you have to situate the affected, as soon as possible to take them out of one of the most harrowing and painful times of their lives, as soon as possible.