Personal experiences only please. I can get the clinical stuff myself.

Tweet

I need to know personal experiences with a degenerative genetic disease called Sanfilippo's syndrome (MPS III). If you know anyone with this syndrome or have it yourself, please tell me your story. I know a set of 2 year old twins that were just diagnosed. I don't want the clinical garbage. I want personal information. Anything, good or bad, would help greatly. Different types of this syndrome include Hunter's syndrome (MPS II), Hurler's syndrome (MPS I), Morquio's disease (MPS IV), Sanfilippo's syndrome (MPS III), and Sly syndrome (MPS VII). Can anyone tell me the differences between these?