No matter how the disease begins, it is always fatal if not properly diagnosed and treated.
Taking your medicine as prescribed is extremely critical to the success of Wilson disease treatment. One of the advantages of having WD is that it is VERY treatable with effective, safe medications leading to a normal life expectancy . . . IF . . . you faithfully take your medications, as prescribed, LIFELONG. There are varying reasons for non-adherence in patients with WD and your physician has probably heard them all. Adherence is especially difficult in patients who were asymptomatic as diagnosis. These patients often do not see a cause and effect relationship.
You are newly diagnosed and you don’t know where to begin. Every newly diagnosed patient experiences the shock of learning they have a rare, genetic disease. The members of our Board all either have Wilson disease or have affected family members, so we have experience, and it is a priority of the Wilson Disease Association to guide you through this time. One of the first things to remember is that Wilson disease is treatable. That being said, here is a list of things you should consider:
- Take your medicine every day, for life. This is the most important thing you can do!
- Be aware of how much copper you consume in your diet. Some doctors recommend a low copper diet for some patients. Low copper diet information can be found here.
- Check out the Frequently Asked Questions on the website
- Read patient stories and stories about Wilson’s Warriors on our website to see that you are not alone
- Watch for clinical studies or trials to test new possible therapies posted on the WDA website or Facebook page.
- Register to receive the WDA emails and newsletters (bottom of the home page). You will find much important information there.
- Ask your doctor or WD care team lots of questions
- Save the dates for our patient conferences.
- Attend support group meetings when they are scheduled
- Review the resource materials and brochures on the WDA website at this link
- We can help sometimes with certain WD medicines depending on where you live.
- You can get peer support if you are a Facebook user by searching Facebook groups for the ones for those affected by WD and by following the WDA Facebook page or by contacting one of the Support Contacts listed on our website
- There is a private peer support group website named Inspire for many diseases and conditions. There is a WDA Community on Inspire for those affected by Wilson disease
- You can contact the WDA directly by phone or email
- If you need financial help to get to a WD specialist check out our Patient Assistance Policy
- Since WD is a genetic disease, make sure other members of your family who could be affected are tested for WD
- Check out the WDA You Tube channel for videos of patient stories and scientific and research information