Erica J. Thiel

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Gender Female
Location Wisconsin, United States
Introduction Age 31 WI I work for a rare disease foundation doing advocacy work w/MPS related to research and family outreach. I Live with MPS I Hurler Scheie /Scheie Syndrome a type of mucopolysaccharidoses, (lysosomal)disorder. I have been receiving enzyme replacement infusions since May 05. I have had approx 60+ surgeries and procedures in just the last 6 years including 30+ shunt revisions for commun. hydrocephalus in 3 years and and now have an programmable TPL an VP shunts to control pressure. C-spine decompression/fusion, lumbar laminectomies, Port placement, thenar tendon transfer, etc. For past blog entries see: I Love being an aunt - the very best feeling in the world! Being an aunt is particularly rewarding since I personally wont ever be a Mom to my own kids (by choice).