Through the work of our charity and through this magazine we are very blessed that our lives entwine with that of many families. Sometime its fleeting support, sometimes is long and lasting relationships.
But my frustration never gets less when I hear of the excruciating battles some families face in the quest for a diagnosis.
What we must remember, and what the clinical, patient facing world especially must remember is that undiagnosed is just that. A point in time when the answers are unknown and even the right questions aren’t yet being asked. Please do not let this window of time, be when families fall through the net and into despair.
To hear today that a child feels that he isn’t believed is a wake-up call to all!
It is not the job of a child to portray him or herself in a manner as to convince others on the `realness` of their rare condition, or feel the burden when they fail to see tests yield results.
For the sake of every child in this undiagnosed limbo we must make sure that it is remembered, that just because it doesn’t `fit` doesn’t mean it doesn’t exist, it just means the grown-ups need to work harder to ask the right questions, run the right tests and find the right science to get the right answers.
Rare Revolution Editor