People ask me why I founded (and continue to run) the Eosinophilic Family Coalition even when J is as sick as he is. Even when eosinophilic disorder is not our biggest challenge. Today I am reminded why. Today I counseled a mother that is new to this disease and in talking found that she had gotten POOR guidance from her doctor on how to manage the disease that has effectively meant theyve wasted the past few months in not treating. My heart hurts for her as she now has to work on not only treating her child but finding a new doctor that can manage this disorder and follow the standard of care that has been established. Its frustrating that while there is still much to learn about these diseases, there is plenty out there for doctors to at least follow the basics and they DONT. Parents are left to figure it out for themselves. And THATS why I do it. I want to be for them everything I wished that I had when J was diagnosed so many years ago. Until theres an effective treatment. Until families arent socially isolated. Until people GET IT. Ill keep plugging away.
Posted on: Mon, 21 Apr 2014 13:35:18 +0000