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galloway mowat syndrome (brain+kidney+dev. delay)
- By cristyandlaura
- Posted May 12, 2009 at 7:54 am · 2 replies
- In My disease has no treatment
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- By mdbishop
- Posted June 14, 2009 at 1:42 am
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II believe my 12 year old daughter has Galloway Mowat syndrome, but do not know of a specific test for it. She is hearing impaired, has global delays, had fsgs and had a kidney transplant when she was 5. She also has vision deficits and orthopedic issues.
- By cristyandlaura
- Posted June 16, 2009 at 5:11 am
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Hi. It's nice to meet you. Laura is five. Her hearing has not been affected but she does have global delays, FSGS, vision, and othopedic issues. Her vision problem is called optic pallor although initially it was labeled optic nerve hypoplasia. She had a normal birth history and we started noticing her delays around six months. They have stopped looking for the "cause" but I guess it's just wishful thinking trying to find others and possibly get her better treatment. Speaking of cause, she had a cousin with very similar symptoms, his hearing was also affected. He died at 3 1/2 due to the kidney complications.
Has the doctor actually given your daughter that diagnosis? I hope she is healthy. Do you know if her brain is affected. An MRI showed that Laura's cerebellum is at least partially missing. We live in Ohio.
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