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DIDMOAD

I realize that there are other circumstances that affect blood sugar levels, but just as a guideline, the answer to three questions will be of great benefit to me.

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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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