I head to bed tonight more informed about my disease then I was when I arrived. If that were all I gained from this trip it would have made coming here worth while, but its not all i have gained.
Through interacting with patients and listening to a few medical panels I have come to understand the major courses of treatment for this disease and their common side effects. I have also learned about a group of doctors at Sloan-Kettering in Manhattan that have a test I need to take, about a research program available through the National Institute of Health, and I have gained a deeper understanding of how the organization supporting all of us living with this disease operates.
All this is wonderful. More wonderful though then any of the information I received while her in San Diego was the opportunity to meet others living with my disease. I have seen what the future may hold for me and its not pretty, but even at its worst there is still value and dignity in the lives of those living with ECD.
So as I go to sleep I will rest well knowing the future has promise.
Thank You Kathy and the ECD GA support team for making all this possible.
Through interacting with patients and listening to a few medical panels I have come to understand the major courses of treatment for this disease and their common side effects. I have also learned about a group of doctors at Sloan-Kettering in Manhattan that have a test I need to take, about a research program available through the National Institute of Health, and I have gained a deeper understanding of how the organization supporting all of us living with this disease operates.
All this is wonderful. More wonderful though then any of the information I received while her in San Diego was the opportunity to meet others living with my disease. I have seen what the future may hold for me and its not pretty, but even at its worst there is still value and dignity in the lives of those living with ECD.
So as I go to sleep I will rest well knowing the future has promise.
Thank You Kathy and the ECD GA support team for making all this possible.
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