My daughter was diagnosed with type 1 at 13. She is now 27 and had a pancreas transplant in 2007. An eye exam before and immediately after the transplant showed no diabetic retinopathy. Her pancreas is working fine. She needs no insulin and has great blood sugars. Several months after the transplant, she started having retinopathy. She has had laser surgery in both eyes two times. She has lost most of the vision in her left eye and is presently in the hospital for problems in her right eye. She is being told her sight is deteriorating rapidly, like she had badly controlled diabetic retinopathy. However, she is no longer diabetic. Doctors say they thought her condition would stabilize but it hasn’t. She has seen doctors at the University of Maryland and Johns Hopkins and no one knows of any solution. Do you have any suggestions? I would take her anywhere to get her help.

I am sorry to hear about your daughter’s situation. There is a history of conditions associated with rapid improvement in blood sugar control resulting in deterioration of eye disease from diabetes. This was first noticed when patients were placed on insulin pumps and blood sugar control rapidly improved. Paradoxically, those with rapid improvement in blood sugar control had worsening of retinopathy. It has been reported in women who become pregnant and then have rapid improvement in blood sugar control. It has also been seen in patients who have received pancreas transplants. This is not to say that all patients do this. That is not true. It appears that only a select few have worsening of retinopathy after improvement in glucose control with a pancreas transplant. There may be genetic factors that predict this, but we do not know what they are at this time. However, it is clear that the body has a memory for diabetes-related complications such that even though glucose levels are well controlled in the present, they may not prove enough to protect from the microvascular disease that occurs with retinopathy. The institutions you have mentioned are world-class institutions. They have good ophthalmologists that treat diabetic retinopathy. I would ask them if there are any other treatments available. For you and your daughter, even another opinion may help.

JTL