From Lancashire, Great Britain:
My daughter, diagnosed with type 1 diabetes about four months ago, has had hearing problems since she was a baby, and her specialist has actually now said he wants to investigate her as he thinks she may have Wolfram syndrome. Her father has had diabetes for seven years. Her hearing loss has dropped considerably in her right ear, although the left is fine, she has blurred vision at times, passes urine a lot, and craves drinks. She has a lump on her left foot that no one has ever seen before, a lymph gland on her right groin that is always up. Now, she has been complaining of tummy aches on occasion and suffers very badly from thrush and dry skin.
The hearing consultant says her symptoms may fall into the Wolfram syndrome, but I'm not quite sure what that actually is and whether or not she has got this. What sort of tests will they do? How long will it be before the results come back? What is the outcome of all this?
I'd appreciate your help on this please as I'm reading all sorts and not too sure what to expect. I'd rather be told so I can prepare for what's ahead and prepare for things to come.
Wolfram syndrome is a very specific genetically linked group of problems: diabetes mellitus, diabetes insipidus, hearing deficits, and optic atrophy. Your daughter's neurologist and endocrinologist should be working closely together with each other to see if this diagnosis is likely or not.
You didn't mention that your husband has any of these same problems. It can certainly arise as a new entity, but most often there are family clustering, and a key to making the diagnosis is that several family members have similar groups of problems. Learning problems are also quire common, and this may merely be unrelated to her having diabetes. Hearing problems, aside from Wolfram syndrome, are not so commonly seen in children with diabetes so this may be why the question of Wolfram syndrome arises. A good ophthalmology exam will help decide if there is optic atrophy or any vision problems, of course.
Additional comments from Dr. Philip Ledereich:I have no experience with this syndrome, but check out Worldwide Society of Wolfram Syndrome Families.
Original posting 22 Oct 2003
Posted to Other Illnesses
Last Updated: Tuesday April 06, 2010 15:09:51
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