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DIDMOAD

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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My 11 year old black lab has been living with diabetes for three and a half years and was under control until four months ago when her blood sugars crept up into the 500 mg/dl [mmol/L] range. Her doctor changed her to Ultralente twice a day, and she seems to do fine for three or four days with blood sugars around 200 mg/dl [11.1 mmol/L], but then she gets hypoglycemic, usually shortly before her next meal. Is this because we are using Ultralente?

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Is diabetes insipidus in combination with smaller than normal optic nerves enough to point to DIDMOAD?

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We would like to know answers to some questions about DIDMOAD.

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A friend was recently diagnosed with type 1. His mother and aunt both died of Wolfram’s syndrome. Even though his father is not a carrier, could he have further complications?

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