Rarely Defined

"The truth is rarely pure and never simple" (Oscar Wilde). -- This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder.

Friday, May 14, 2021

Where does a year go?!?

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Where to start this post. *hand to face palm* - i've thought a few times about updating but then would get distracted and I never did co...

1 comment:

Sunday, July 5, 2020

Shunts (infection), ostomy issues, etc.

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I am very good these days at thinking about writing an update here but then not actually doing it. There's a fair amount going on, a fai...

6 comments:

Friday, June 5, 2020

Long over due (though not alot) update

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It has been another long while since I've written here. I update on fb but not very good about coming here to update. Sorry for any who...

4 comments:

Monday, March 30, 2020

Long time update...

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It has been a really long time since I updated this... 5mo apparently. I often think about doing so but then don't. Really a lot has g...

2 comments:

Monday, October 28, 2019

New diagnosis; few more surgeries; New drug update (what's all going on)

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Oy, lol, it has been a long, long while since i've updated here and of the things that have changed. Things i'd sure never thought ...

1 comment:

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Who I am

Erica J. Thiel: Wisconsin, United States; 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: www.caringbridge.org/wi/ericathiel 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).

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