From Cork, Ireland:
I have been asked by a woman who has no access to the Internet a question; I wonder if you could help. She has a child with DIDMOAD or Wolfram's syndrome and wanted to find out as much as possible about potential treatments. Ideally a list of reference material or contacts for her to learn how to help her child.
The fact that the diagnosis of this rare syndrome has been made suggests that your friend's child is already being cared for by a competent specialist. The diabetes component of the clinical picture is usually fairly easy to manage; but of course there is no one treatment that can deal simultaneously with the diabetes insipidus, the optic atrophy and the deafness as well. The involvement of these several components is quite variable and to the degree that they are involved the child may need an array of specialist help as well as participation in a general program for handicapped children.
Perhaps the best way to start with the reading would be for you to print out the following abstracts for your friend: "My 15 year-old son was diagnosed with Wolfram's Syndrome" or "and what is DIDMOAD I have read about?"
A much more complete review can also be found at Wolfram Syndrome and Wolfram Syndrome, Mitochondrial Form. After that, it's really a matter of getting help at a medical library though I suspect that it will be the sympathy and dedication of the regional consultant paediatrician that will help most.
Additional comments from Dr. Quick:Also, see a new website, Wolfram syndrome by Joy Koenig, M.D.
Original posting 14 Sep 1998
Posted to DIDMOAD
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