From Illinois, USA:
My daughter, five years old, was recently diagnosed with Type 1. She has an identical twin sister. What is her sister's chance of getting diabetes? Is there somewhere I could get statistics from research? If she is to get it, would it happen sooner than later, within a year versus ten years from now?
By the age of five years after the affected twin developed clinical diabetes about 10% of the originally unaffected twins will have become diabetic. And by 10 years about 20% will be diabetic. Numbers observed are small; but in one series there was not much change between 10 and 30 years of follow up; but after that there was a sharp fall off in discordance with 60% of of the originally unaffected twins now being diabetic. The confidence limits for these figures are very wide so that it is not possible to assess the probability of developing diabetes in any one individual with any degree of precision. In an earlier study in Britain it was suggested that if the discordant twins did not develop diabetes within six yeaars of their affected sibling then they would never do so. The more recent study however suggests that there may be a pause between 10 and 30 years after which there is a further reduction in discordance. Also if antibodies are measured, not just the onset of clinical diabetes, the concordance is much greater.
However you should discuss with the twin's doctor the desirability of following antibody levels in the unaffected twin and of possibly then participating in the CANENDIT trial. A telephone number to contact about this is 1-800-425-8361. This is actually the number of the equivalent trial in the US; but they would be able to give you the number of the Canadian equivalent.
Original posting 4 Oct 97
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