From San Jose, California, USA:
My daughter was diagnosed with DIDMOAD 12 years ago. She is 17 now and has Optic Atrophy, Diabetes Insipidus, and Diabetes Mellitus as well as neurological dysfunction. Recently, we found her unconscious and she was admitted to the intensive care unit due to aspirated stomach contents inhaled into her lungs. The diagnosis was pneumonia. The neurologist said he is 51 percent sure she had a seizure. My child is dying and there seems to be nothing anyone can do. What is her life expectancy and what can we do?
Also, there seems to be two causes for DIDMOAD, one is maternally passed in the DNA. I am worried about my other daughter who is 19 but appears fine. Is she out of the woods? How do I know if I passed this horrible affliction to my youngest daughter?
You should ask these excellent questions to your endocrine team since they could arrange for testing to see what your other child has or doesn't have. By this age, it is unlikely that this would be missed. Also, you may want to arrange for a special genetics consultation so that some of these questions also could be addressed. Since you did not pass any genetic material purposefully to your child, you should consider some counseling for yourself so that you can get some support for what you and the rest of the family need to do and don't have to handle so much guilt for this rare genetic condition especially under these conditions where she is in such critical condition at the moment.
Additional comments from Brenda Hitchcock:See DIDMOAD (Wolfram's Syndrome) for more information.
Original posting 8 Mar 2004
Posted to DIDMOAD
Last Updated: Tuesday April 06, 2010 15:09:56
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