Kate is from Australia and has been confirmed with the genetic mutation RANBP2 associated with ANE. Her’s was not an inherited mutation but created new in her (de novo). She has had 2 ANE attacks, one as a baby and one as a teen. Although Kate had multiple brain stem lesions that many articles state are predictive of a more severe outcome, unlike most ANE patients, she did not go into a coma. 2nd attacks are also said to have far worse outcomes than a first attack. However, as Kate has had no lasting physical disability and her Acquired Brain Injury is far less severe than many of our members, Kate’s journey leaves all of us with many questions. The contradictory reports are the reality for many ANE families looking for answers. ANE is an under researched & under diagnosed disease.
Read Kate’s story –http://aneinternational.org/ane/stories/australian-story/
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