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Everything you need to know about Wilson Disease

Food . . . .

Adherence to a low copper diet is most important during the initial phase of treatment. The recommendation is to avoid the foods highest in copper content: organ meats, shellfish, chocolate, nuts, and mushrooms. Once copper levels have stabilized at normal levels, these foods are allowed occasionally. For a comprehensive list refer to the U.S. Department of Agriculture (USDA) website . If you are a vegetarian, please consult a dietician, as many of the foods and protein sources in a vegetarian diet are high in copper. Wilson disease cannot be managed by diet alone. Proper medication is necessary lifelong!

Water . . . . .

Copper content of the drinking water you consume should also be tested. If the water is over 0.1 ppm (parts per million) (which is 0.1 mg/L), consider an alternative water source or invest in a good filtering system that removes copper. Your local community or private water testing firms can perform the testing on your home water supply. If you have copper plumbing in your home, some of the copper content can be reduced by running the water for a while before you use it. As water sits in the pipes the copper leaches into the water. for this same reason, avoid using copper cookware for preparation of food. If you work or reside in a location where the water supply has not been tested, consider using bottled water that does not contain copper.

Vitamins . . .

Consult your health care professional before taking a multi-vitamin. If your physician approves, as your pharmacist to find a good supplement that does not contain copper. If you are a woman who is pregnant, or wishes to become pregnant, please have your obstetrician consult with your hepatologist before prescribing prenatal vitamins. Most prenatal vitamins contain an abundance of copper and these should be avoided.

Other Dietary Supplements . . . .

There are many over-the-counter dietary supplements and herbal preparations that claim to be beneficial for some part of your body. Be cautious about this because many can interact with other prescription medications you are taking. Some can be beneficial but others may actually be injurious to your health. Also, many supplements are processed by the liver and may cause additional liver damage or, in the case of existing liver damage, may not be properly utilized by the body. Please refer to the U.S. Food and Drug Administration (FDA) publications, "What Dietary Supplements Are You Taking? Does Your Health Care Provider Know? It Matters, and Here's Why" and "Dietary Supplements What You Need to Know" these can be found at www.fda.gov/Food/DietarySupplements/UsingDietarySupplements/UCM109760.htm. These contain much useful information about dietary supplements, and personal logs that you can fill in and share with your doctor.

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Common Queries and Questions

The course of liver disease in Wilson's disease stands in contrast to other forms of cirrhosis for many people. The chronic liver injury in Wilson's disease is caused by excess free copper, and the liver disease often stabilizes or even improves once the excess copper is treated with zinc acetate maintenance therapy. While some people do progress to need liver transplantation, others may actually see long-term improvement in their liver function over time. It is important to be attentive to issues such as immunizations for viral hepatitis, avoiding excess alcohol consumption, and treating complications of portal hypertension in order to give the liver its best chance to mend. Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan
Generally, the brain is affected symmetrically with excess copper deposition, although symptoms can be worse on one side of the body than another. This may have to do with factors of asymmetric neurologic development, such as being right or left-handed. The copper is often seen most prominently in the basal ganglia, the area deep within the brain that coordinates movements. The face of the giant panda sign refers to a characteristic appearance of the basal ganglia in advanced Wilson's disease. This is a description of the appearance of the basal ganglia wherein one can get an impressionists image of the face of a giant panda. Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan
High serum copper is not an indication of Wilson disease. Since most Wilson patients have a low ceruloplasmin they actually have a lower than normal serum copper. Ceruloplasmin is the protein that binds with copper to remove it from the body. It is the unbound (to ceruloplasmin) copper that is free to roam around the body and accumulate in organs causing Wilson disease damage. An elevated serum copper is more often due to an elevation of the level of serum ceruloplasmin since it contains ~90% of the circulating copper bound to it. Elevations of ceruloplasmin can occur with inflammation, in response to estrogen therapy and in pregnancy. Note: The exception to this is when there is severe liver injury (acute liver failure) caused by Wilson disease. This causes very large amounts of copper to be released into circulation and causes markedly elevated serum copper. When this occurs, patients are very ill and usually have jaundice (yellow eyes and skin color) and very abnormal lab results with respect to liver function and blood coagulation. - Michael Schilsky, M.D., Weill Cornell School of Medicine, WDA Medical Advisor
Hepatic: Asymptomatic hepatomegaly; Isolated splenomegaly; Persistent elevated AST, ALT; Fatty Liver; Acute hepatitis; resembling autoimmune hepatitis; cirrhosis (compensated or decompensated); fulminant hepatic failure Neurological: Movement disorders (tremor, involuntary movements); drooling, dysarthria; rigid dystonia; pseudobulbar palsy; seizures; migraine headaches; insomnia Psychiatric: Depression; neuroses; personality changes; psychosis Other symptoms: Renal abnormalities: amino-aciduria and nephrolithiasis; skeletal abnormalities: premature osteoporosis and arthritis; cardiomyopathy, dysrhythmias; pancreatitis; hypoparathyroidism; menstrual irregularities: infertility, repeated miscarriages From: A Diagnostic Tool for Physicians (3/04)
If the water is over 0.1 ppm (parts per million) (which is 0.1 mg/L), I recommend an alternative source. While 0.1 ppm isn't particularly hazardous, it indicates that significant copper is coming from somewhere, and at certain times or under certain circumstances the level might be quite a bit higher. George J. Brewer, M.D. Department of Human Genetics, University of Michigan Medical School
Yes. Since Wilson's disease often affects the liver, many Wilson’s disease patients cannot afford additional injury to the liver. Hepatitis A or Hepatitis B vaccine is as safe for Wilson's disease patients as it is for others. - H. Ascher Sellner, M.D.

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