AS in my life

My daughter Liselotte has Angelman syndrome, a neurological disorder that is so rare that often I have to explain what it is, even to medical professionals.

When Liselotte was diagnosed, June 1996, there was little information on the web, except for a page in England maintained by John Miles. When I heard that this Angelman site was to be discontinued I asked and was given permission to copy the contents of the page to mine.

I decided to add links to everything I had found and share other things I learned about AS.

Now there are many web sites about Angelman Syndrome, and the information that was once scarce is now much easier to be found.

The things that distinguish this site from others are Martha Sprowles's brochure for parents new to AS and the Photo Gallery. Don't leave this site without having had a look at those sections.

The brochure written by John Miles is somewhat outdated, especially on the genetics part. The reasons why it's still on this site is because the document made me realise that my daughter had this syndrome when she was 7 months and because the writing is a beautiful mix of factual information and compassion. That makes it a valuable piece of writing to me, and please visit other sites for an update on the chromosome and the gene stuff.