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I saw this story today on cnn.com – thought some of yall might like to see it;).


What I think is particularly relative to T&T and what we have been discussing regarding documenting our health narratives is that this family decided to video tape the progression of Kylie’s illness…..from minor twitches all the way to her uncontrollable writhing.  As technology advances, coming up with smaller, convenient versions of our dinosaurs (such as the Flip camera, a thumbnail sized video camera that can hold I think up to 8gb of memory…or the Droid evo…10 megapixel camera/video that is accessible any time you have your cell phone on you)…are more people going to be able to visually document their narratives for doctors to see the progression of symptoms – such as Kylie’s?? 

On another note – I wish that Sally would have been able to document her progression by video tape.  I could only imagine seeing a woman with no weightroom or steroid access to “bulk up” like a body builder.  The impact those visuals could have had on the doctors is unreal.  I mean – just unbelievable to me seeing as I know personally how much hard work it takes just to drop 1% on the BMI.  I bet this poor lady is under 10%, which for women is not exactly “healthy” –  but fascinating that she hasn’t lifted a finger.  But then again, I can also only imagine, how it must feel to have your body crushing you and not knowing (and those doctors/web sites that we trust so much) to not be able to give a straight answer.

Lastly, I thought I would link yall to the NIH Rare Diseases website – pretty good info.


Posted September 21, 2010 by terieleawatkins in Uncategorized

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  1. Fascinating medical mysteries post. Thanks for linking us to it.

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