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For Those Affected By Wilson Disease

We know you want to help, but know this first!

We love that you are so willing to help when called upon but please be very cautious about completing surveys or providing your personal information to pharmaceutical companies, researchers, public relations firms, marketing representatives, or other entities who may contact you through Inspire or social media, or even meet you at a WDA conference. These people may promise you money or other things that never occur or are not true. Recently, we have become aware of such people contacting WD patients directly with surveys or requests for interviews. The WDA will be issuing a written statement to pharmaceutical companies that may need patient information indicating that we will help those who can document a legitimate need for such information and that they will protect any patient information they collect. That means we will help companies to promote legitimate patient surveys, or we will tell patients about clinical studies. Hopefully, that should eliminate the need for them to hire strangers to stalk you on Facebook, Inspire and even at our conferences. So, if you are approached by someone asking you to respond to a patient survey or be interviewed, and you haven’t heard anything about that particular effort from the WDA, please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. before responding to them.

The WDA spends a lot of time researching and talking to pharmaceutical companies. We treat them with courtesy if they treat us with courtesy and respect our patients. We know who is new on the scene and who is about to start clinical trials. We do whatever we can to advance new treatments and research for you.

You all know that there have been many complaints about the high cost of drugs or insurance companies that won’t cover the prescription costs. A flurry of pharmaceutical companies has jumped into possible development of Wilson Disease treatments because they are aware of the profits that can be made. They are businesses and not philanthropists, so their first priority is to their business and shareholders. Some are more ethical than others. Others are so new that sometimes they are hiring marketing companies to do research even though these marketers do not have any background in the disease at all. WDA will always announce legitimate clinical trials and surveys on our website, Facebook and in emails. If you have any questions about any entity asking you for information you should contact us and we will verify them.


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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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