It is not possible to measure the deposits in the liver with an MRI.

If you had the choice, you would try to treat with zinc during pregnancy. However, the other therapies are just as possible. It is absolutely no problem to give birth to a healthy child if the therapy is well adjusted.

No, due to the Transplantation Act, as there is a genetic disease.

This varies from case to case, depending on the severity of the symptoms. An application for severe disability can be made.

Wilson's disease can usually be treated very well without a transplant. In rare cases where the liver is so severely damaged that it is no longer functional, the only last option for those affected is a liver transplant. It is a high-risk surgery that 80% of Wilson patients survive. After a liver transplant, specific therapy for Wilson's disease is no longer required. However, patients must take anti-rejection medication for the rest of their lives, and this has side effects.

We are there for you if you need our support. We offer you information about Wilson's disease and an exchange of experience with other Wilson's disease patients. We organise regional discussion groups and patient symposia for patients, relatives and interested parties.

The diagnosis and modern treatment of Wilson's disease requires experience that only doctors who have already treated patients with Wilson's disease have. This is usually the case in certain larger hospital outpatient clinics or, very occasionally, with doctors in private practice. Good co-operation between the GP and a specialist to whom patients are referred by the GP for regular follow-up checks is desirable.

In May 2023, the manufacturing company announced that it had discontinued its research programme on the active ingredient tetrathiomolybdate (TTM) with the product name ALXN1840 without replacement.

This recommendation only applies to therapy with D-penicillamine. Vitamin B6 substitution treatment is not necessary for Trientine.

The two medications should be taken separately, one 1 hour before eating and the other 2 hours after eating.

1 hour before eating or 2 hours after eating. Zinc should be taken with water. It is important to have an empty stomach when taking zinc. The interval between taking zinc and eating must be observed.

Only allowed in small quantities. Alcohol is very harmful with any liver disease.

According to the latest findings, a low-copper diet is not a decisive factor in the treatment of Wilson's disease and is therefore only of minor importance. Although it is not practicable to reduce copper intake or even decopperise the organism through dietary measures, it seems reasonable, at least at the start of treatment, to avoid foods containing copper in particular, such as liver and seafood.

The decision to exempt medicines from co-payment is the responsibility of the umbrella organisations of the health insurance funds or the individual health insurance funds via discount agreements.
Criteria are primarily economic: The drugs concerned are those that are needed by a large number of patients, where there are several suppliers for an active ingredient group, or for which the health insurance funds have been able to conclude discount agreements due to the large quantities involved.
‘Metalcaptase’ fulfils none of these requirements. In fact, there is a monopoly and the number of patients is relatively small compared to the number of diabetes patients or patients with heart disease, for example. Another way to obtain an exemption from co-payments is to reach the 1% limit. This means that if the co-payments reach 1% of the annual gross income, the doctor confirms that it is a chronic illness and that the patient is complying with the treatment, the health insurance company must exempt the patient from co-payments once the limit has been reached. This requires an application to the health insurance company.

According to Annex 1 of the Directive of the Joint Federal Committee on Vaccinations pursuant to Section 20d (1) SGB V (Vaccination Directive/SiR), both the hepatitis A vaccination (p. 8 of the Annex) and the hepatitis B vaccination (p. 10 of the Annex) in conjunction with Section 11 (1) SiR are covered by statutory health insurance in the event of liver disease or a disease involving the liver.

To the best of our knowledge, genetic testing as part of the diagnosis is at best ordered by a centre specialising in Wilson's disease. In these cases, according to our information, it is usually reimbursed by the statutory health insurance fund. If you have any concerns, we recommend that you speak in advance with the relevant health insurance company.