Emma's World: Medical papers posted

Thursday, October 30, 2008

Medical papers posted

I've posted a link to several journal articles here on Emma's site (see the Helpful Links section on the right hand side; it's the first link) on the following topics:

1. People with TAR Syndrome and cerebellar malformations (2 papers)
2. People with rhombencephalosynapsis and hand abnormalities or cerebral palsy (2 papers)
3. Gomez-Lopez-Hernandez Syndrome (4 papers)

All of the papers are in PDF format.

2 comments:

Cassandra said...: Hi There, It is Cassandra from RoomsofJade. I am now following your blog.

Cassandra; June 24, 2009 at 1:35 PM
JoAnn said...: Hi Cassandra,

Thanks for visiting (and following) Emma's blog! :)

I think it's great that we now have the RoomsOfJade site for parents of kids with rhombencephalosynapsis to communicate with each other!

JoAnn; June 24, 2009 at 7:19 PM

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Purpose of this blog

My daughter, Emma Clarissa, is a beautiful, affectionate, sweet, brave, intelligent little girl who just happens to have multiple serious medical diagnoses.

This blog focuses on her triumphs, challenges and day-to-day life as she contends with both TAR Syndrome (Thrombocytopenia Absent Radii Syndrome, a rare condition which causes skeletal abnormalities and low platelet counts) and GLH Syndrome (aka cerebello-trigeminal-dermal dysplasia, an extremely rare disorder associated with a cerebellar malformation known as rhombencephalosynapsis).

In addition to these diagnoses (or in many cases, because of them), Emma also has microcephaly, global developmental delays, Failure to Thrive, GERD, asthma, and tone and mobility issues (e.g., cerebral palsy).

This blog also provides a place to post helpful links to sites with information on these conditions as well as online support groups. Support groups can be invaluable to parents of children with medical problems, who frequently feel isolated and/or need answers STAT!

WARNING: occasionally a post or comment may contain references to God, or offer thanks or praise to God. We acknowledge His hand in our lives and in Emma's, and thank Him for all He has done and is doing.