In healthy individuals, copper is absorbed from food, and the excess is excreted by a substance called bile which is produced in the liver. It should be noted that WD is hereditary and fatal if not treated.

WD patients must be monitored continuously and present many challenges. One example of the work that lies ahead is that very little is known about WD in Germany. Upon that realization, researchers analyzed the medical care WD patients received at various German university centers.

20 questions were sent to 108 neurology, pediatrics, and gastroenterology departments in a total of 36 university hospitals. The questions covered the characteristics of patients with WD.

About the Results

58% of the questionnaires were completed and returned. The researchers determined that a total of 53% of WD patients in Germany are seen each year. Those numbers represent approximately 950 patients. 84% of patients and families receive routine monitoring at least twice each year.

46% of departments recommend a medical therapy reduction during pregnancy. These recommendations are in addition to the 14% of departments suggesting that WD patients not breastfeed.

Liver transplantation is a curative treatment for WD. Between 1987 through 2008 there were 570 children and adults with WD who received liver transplants. 72% of gastroenterology departments reported one or more patients who had received liver transplants.

Conclusion

German universities adhere to specified standards and follow the recommended international guidelines. However, not many centers in Germany attend to a large number of patients.

It is recommended that central units and/or networks be considered in an effort to improve WD patients’ care.