reader request: aniridia

A reader, Sue, just learned that her son has aniridia and nystagmus.  Aniridia is a lack of iris, which is associated with low vision and other vision issues.  She would love to connect with any other parents of children with aniridia, or anyone who has dealt with this.  Please leave a comment, or email me (ann@shinypebble.com) and I will put you in touch with Sue.

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2 responses to “reader request: aniridia

  1. Hi Sue,

    My name is Helen Mopsick and my son, Colton is 2 years old with aniridia. PLEASE feel free to email me any questions or concerns. Also, if you need to talk to someone on the phone, I’m also available. The first few months are the hardest as you’re dealing with all the new information and you are naturally worried. Sincerely – Helen.

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  2. There are a number of aniridia support groups, where you can contact people with and connected to aniridia.

    If you are in the USA:
    Aniridia Foundation International http://www.aniridia.net
    United Families of Aniridia: http://www.visionfortomorrow.org/united-families-of-aniridia-ufa/

    If you are in the UK:
    Aniridia Network UK http://www.aniridia.org.uk

    These groups are also on Facebook and Twitter

    Make sure you join the Aniridia Network International mailing list on Yahoo Groups: http://groups.yahoo.com/group/aniridianetwork

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