I have been living in the "LysoWorld" now for about six years. I started very pinpointed with one particular disorder (there are over 60 - most w/ ridiculously hard names to pronounce). It took a long time to realize that we are a part of this much larger community of Lysosomal Disease and even longer to figure out how we all fit together. I saw an amazing example of this last week at the Lysosomal Disease Network Symposium in San Diego.
I watched a Sanfilippo parent, a Hunter parent and a Niemann Pick type C parent sitting together, connecting and sharing not only experiences, but extremely important therapies.
The first question posed when the three of them sat down was, "So what's the progression of disease with your child?" And regardless of the name of the disorder or the locations where they live, each of them are experiencing the same things and same decline symptomatically.
It is my great hope that this community will offer us all the same type of connection that these three families were able to experience together. There is so much available to us as patients and parents and we can't possibly know it all! To be able to learn and teach each other is the most amazing thing...And watching it in person was an incredible experience.
It was truly LysoLife in action.
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Amazing Experience
- By StephLynStill
- Posted February 24, 2009 at 6:46 pm · 5 replies
- Shared with the public
2 Recommendations
