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HomeShop at BookSurgeEducationStudents & Student LifeJoe Learns About Fabry Disease |
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| Customer Reviews: | | Average Customer Review: ( 1 customer reviews )
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Most Helpful Customer Reviews
From A Fabry Sufferer Aug 28, 2011
By Normal Sized Man
This book is wonderful in that it is a way that I can talk to my Six-yesar-old daughter about the disease that she and I share. It is quite current as it discusses 'Joe' getting ERT.
The symptoms the little boy in the book describes are the same symptoms I had when I was a kid. The art is manga-inspired and completely accessible.
I would say the age range for this book is about 4-10. The reading level is probably about age 5-7 (kids vary so much).
The only negative comment I have, and for me it's substantial, is that at the end of the book (spoilers!?!) after Joe has received ERT for a while, his symptoms seem to disappear. His pain goes away and his mood gets better. ERT has varying results for symptoms. Some people report improvement in symptoms, but my experience has been no improvement in pain or any other daily problems I have. ERT is not primarily to address symptoms, it is primarily to prevent further damage to most of the body (it does not reach the brain). To me, the resolution of the book is problematic because it's telling my daughter that once she is on ERT, her pain will go away. This may not be the case, so I find it a bit disingenuous.
Other than that, everything else is spot on for my experience. I didn't expect it to be as high quality in writing and art as it's been written by a genetic counsellor and illustrated by a talented yet inexperienced to the field of children's books artist. I bought it since there isn't much out there for kids regarding Fabry Disease, and since it's genetic it affects anyone who has it from conception onwards. I was surprised that it's actually a high quality book. I would recommend it even if you have to modify the ending slightly to fit in to a more typical response to ERT.
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