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Angelman Syndrome


I first learned about Angelman Syndrome at a camp weekend for families of children with Down syndrome near White Pass in Washington State, Prime Time. Parents who had enjoyed the camp the previous weekend posted wonderful pictures of their children and provided information on Angelman Syndrome for camp volunteers and family campers.

If an older baby or in your family has been recently diagnosed with Angelman Syndrome, it may be difficult to explain to friends and extended family that early feeding problems and developmental delays at six to twelve months were symptoms of the condition. These beautiful children experience many challenges that often include the onset of seizures when they are two or three years old, speech impairment, and difficulty with balance and movement.

Some of the issues that Dr. Harry Angelman observed in the mid-1960s were 'jerky movements' and 'bouts of laughter,' causing it to originally be known as 'Happy Puppet Syndrome." Many people are surprised to learn that the syndrome was named after the doctor rather than being descriptive of their children's personalities. Anomalies on chromosome 15 cause the neurological disorder. Of course, children and teens with Angelman Syndrome have a full range of emotions and diverse personality traits.

Early intervention activities, supportive therapies, good medical care and medication to control seizure activity give children with Angelman's Syndrome the best start in life. Infant stimulation, augmentative communication options and educational support help those with AS show us their true potential.

There has never been a better time to grow up with Angelman Syndrome than there is now. Growing up included in the mainstream of family and community life, small accommodations for a few extra issues, clinical trails of medications for treatment of symptoms and other research efforts will provide many opportunities for children with Angelman Syndrome to show us how much they can do and who they were meant to be.

Browse at your public library, local bookstore or online retailer for books like:
Angelman Syndrome: Causes, Tests, and Treatments
or
The Official Parent's Sourcebook on Angelman Syndrome: A Revised and Updated Directory for the Internet Age

Angelman Syndrome Resources at the Family Village website
http://www.familyvillage.wisc.edu/lib_angl.htm

International Angelman Syndrome Awareness Day -
February 15
http://www.youtube.com/watch?v=gLCz9Vry3EM

Angelman Syndrome Support, Education & Research Trust (ASSERT)
What is Angelman Syndrome?
https://www.facebook.com/note.php?note_id=490425644336559

Clinical Trials - Angelman Syndrome (Scroll to lower part of page)
http://www.ninds.nih.gov/disorders/angelman/angelman.htm

A Trial of Levodopa in Angelman Syndrome - Recruiting
California, Massachusetts, South Carolina, Tennessee, Texas
http://clinicaltrials.gov/ct2/show/NCT01281475

2012 Clinical Trial - University of South Florida
Minocycline in the Treatment of Angelman Syndrome
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01531582
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Content copyright © 2014 by Pamela Wilson. All rights reserved.
This content was written by Pamela Wilson. If you wish to use this content in any manner, you need written permission. Contact Pamela Wilson for details.

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