Have you ever heard of Angelman Syndrome?

rare disease
mcrlover1309

I have a little cousin with this. I have lived with her for the last few years. I was just wondering if anyone out there knows about it, or has any stories to share. It is a very rare and complicated disease. During conception, one chromosome was disfunctional. Mariah can’t talk, be potty trained, walk normally. She has the WORST temper you could imagine. Its very frustrating to live with. She is embarassing in public. She will go up to a stranger and take food off of their plates, hit them or scream loudly. She is a sweet little girl, I do love her, don’t get me wrong. She is actually pretty advanced compared to all the other children with it. Doctors told her mother she would never walk. She practically runs at times! She is very smart. If you tell her something, she knows what you are saying. She knows how to work her mother (and grandparents) over to get her way. Well, anyway i was just wondering if anyone has anything they can contribute to the topic. Anything will be appreciated!

Angina and Diet

3 Comments so far

  1. JC on May 26th, 2009

    I worked with an individual who had Angelman’s. She also had profound mental retardation. She would always laugh and giggle constantly (and innapropriately) which is an earmark of the syndrome.

  2. Ali on May 26th, 2009

    I am the mum of an angel and they can be a handful A lot of doctors don’t know a lot about the syndrome and the scope of it in terms of behaviour and what to do.
    The bad temper is not common at all – most are really happy and social. Early intervention and structured schooling usually addresses behavioural issues.

    There is a lot of research happening however that is headed towards a treatment that will mitigate the issues that cause the intellectual disability look at http://www.cureangelman.org we are also getting underway with stuff in Australia

  3. Em on May 27th, 2009

    I have a daughter with Angelman Syndrome as well.

    Yes, she can be quite the handful. I think becoming familiar with a few basic behavior management techniques would help your family.

    Best wishes.

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