Hi everyone,
I’m writing from France, where I’ve been exploring all the resources available for Wilson’s Disease patients. After speaking with doctors and other patients, I’ve realized that there is a significant lack of accessible information, and many people end up struggling to navigate their treatment journey on their own.
In France, we have a Rare Disease Reference Center for Wilson’s Disease, located in Paris
Link: crmrwilson.com/
which is supposed to be a key hub for diagnosis and patient follow-up. However, accessing the right treatments and the latest medical advancements can be quite challenging. Some medications, like trientine, are extremely difficult to obtain, and information about alternative treatments (zinc, new protocols) is not always well communicated.
Recently, we came across clinical trials involving machines that can directly remove copper from the bloodstream.
Link: clinicaltrials.gov/study/NC...
Yet, this kind of information is rarely shared with patients by doctors in France. Has anyone here had access to such treatments in other countries?
Beyond medical care, daily life adjustments are also crucial—especially when it comes to diet. In France, some people are starting to share resources on low-copper recipes to maintain a balanced diet while managing the condition. It’s not always the first thing people think about, but it can make a huge difference.
Link: recettes-wilson.fr/en/
I’d love to hear about your experiences:
Have you faced similar difficulties accessing treatments in your country?
Are there any alternative solutions that have helped you reduce copper levels effectively?
How has dietary management impacted your condition?
Looking forward to learning from your experiences!
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