nystagmusmum

nystagmusmum

When my daughter was just a few weeks old, a doctor told me she was blind.  She wasn’t blind, of course.  I knew that already.  But I also knew that there was something wrong with her eyes.  It turned out that she had something called nystagmus.  We had never heard of it and there was very little information around.  Basically, we had to wait and see and find out for ourselves what living with nystagmus would be like.  That was over 20 years ago and my daughter and I are still learning.  We are happy to share our experience with other families.

If you’d like to have a chat about nystagmus, you can contact nystagmusmum by email:

enquiries@nystagmusmum.co.uk

For more information and support go to the Nystagmus Network

http://www.nystagmusnet.org/

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1 Comment »

  1. Hi My daughter aged 15 has nystagmus but bizarrely I only heard the correct term this year despite her eyes always having wobbled. In Chelsea’s case she has other problems to worry about as she is a quadriplegic following a stroke when she was 9 and lots of other issues. Her eyes seem to be getting worse and she has recently developed nausea and headaches akin to motion sickness which her neurologist assumes is due to a repeat bleed in one of the many cavernous haemangiomas she has in the brain. Looking forward to learning from you and thanks for sharing – i will try to add some value too. FYI we are English but have lived in Singapore for almost 20 years and Chelsea was born here. Sandra

    Comment by Momontheside — December 28, 2013 @ 9:27 am |Reply


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