Wilson's disease. Anyone out there living with this?

Question

How does it effect your life.

Answer 1

Since Wilson's disease is so rare, most physicians have no experience with it. In thirty-five years of practice, I saw it only twice, both cases in the same family. The oldest was not diagnosed until his death. The youngest is doing well with treatment from birth.

The major lifestyle change is diet, avoiding foods high in copper. Constipation was an issue.

The other issue is taking a chelating agent and getting periodic lab work to make sure the medication is not creating a problem. Fortunately, an internationally famous liver specialist practices at our medical center.