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Just diagnosed with Wilsons Disease at age 49 after seeing many doctors. I have Factor III blood Disease also. I can’t take meds for Wilsons due to clotting problems. Treating symptomaticaly with diet and Trihexyphenadil for involuntary movement. Anyone have same experience or advice? Trihexyphenadil seems to help me but they say my diet is key due to fact I can’t have surgery to replace my liver as I would not survive it.
You should at least be on zinc acetate (Galzin). Also, contact the Wilson Disease Association http://www.wilsonsdisease.org/ for more information and guidance. Hope that helps.