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DIDMOAD

My 30 year old daughter, who has diabetes insipidus, also has optic atrophy but not deafness, and a pituitary tumor which causes the insipidus. If she would decide to have children, would they inherit this condition? Would they be born with it?

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My 22 month old daughter has been diagnosed with diabetes mellitus and diabetes insipidus. Any information help and advice would be greatly received, and I would like anyone on the list who has a child with both these types of diabetes to contact me.

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My 9 year old daughter has just been diagnosed with Optic atrophy. She has been to see both a eye specialist and a endocrinologist at the Great Ormond street Hospital in London, Both have advised that she will need to go for a genetic test. They have mentioned DIDMOA. Is this the same as DIDMOAD?

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For more than 15 years, I have been experiencing a decline in my vision. I saw an optical neurologist who told me that my family had Wolfram’s Syndrome due to the fact my father had the same problems. Should I get tested, and, if so, where would I go to get such a test?

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My 17 year old daughter has DIDMOAD. What is her life expectancy? What can we do? How do I know if I passed this to my youngest daughter? Is my other daughter likely to get it?

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My daughter was diagnosed with type 1 diabetes last year. She has a hearing loss and may have Wolfram’s Syndrome. What is her life expectancy? Will she get the optic atrophy? Are there more studies that can help me and my family?

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Has there been any research into a cure for Wolfram’s syndrome? I have two cousins who have it. Are their siblings at risk for it?

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My son had a DNA test which showed he has the Wolfram gene but only in one gene not both, and the doctor asked about his behaviour problems and eyesight (which are both bad, and he is going for a hearing test next month) didn’t seem worried. However, after reading about DIDMOAD, I am a bit concerned. Can you enlighten me more?

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My brother has had type 1 for years. His doctor says he is going blind in one eye and needs liver tests. I am in the U.S. How can I help him?

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My son has had hearing loss in both ears since birth. Last month, he was diagnosed with type 1 diabetes. Could he have DIDMOAD?

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