Who and Why

My name is Joanne Juhnke. I am a data librarian and the mother of a child who has Linear Nevus Sebaceous Syndrome and autism.

When I began to search the World Wide Web for information about LNSS, I was startled at how little there was to be found. The Web is an amazing place to make connections between people needing support related to various medical conditions. And yet, all the way into 2009, there was no online support group specifically for LNSS, and very little consumer-oriented information. Practitioner-oriented online information on LNSS can be hard to find and sometimes contradictory, occasionally even flat-out wrong!

The sheer number of names for the condition adds to the difficulty in finding resources. If you've been told your child has Schimmelpenning Syndrome, you won't know to search for information on Linear Nevus Sebaceous Syndrome, and vice versa.

I am a librarian, not a medical professional. The information presented here is my own synthesis from medical textbooks and papers published in medical journals. These pages have not (yet) been subject to medical review; I hope to change that in the future.

Please let me know if you have any comments or questions about LNSS Connections, at LNSS-Connections-owner@yahoogroups.com!

 

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