You are leaving an Alexion website to view another website to which this Privacy Notice does not apply. Alexion does not review or control the content of non-Alexion websites, and this link does not constitute an endorsement by Alexion.
For many people in the Wilson disease community, the challenges of a lengthy diagnosis journey are extended and impacted by potentially complicated treatment plans.
Resources are available that may help you communicate with your doctor.
You deserve to feel empowered when it comes to managing your Wilson disease. Proactively monitoring and acknowledging changes in your body, no matter how big or small, is not always easy. When you do notice changes, it’s important to discuss with a member of your healthcare team.
Here are some resources, which have been developed based on input from real Wilson disease patients and caregivers, to encourage you on this journey.
How do you feel today? Tracking your Wilson disease symptoms on a regular basis is essential to understanding your disease and identifying if it is improving, staying consistent or potentially progressing.
Delayed visits with your healthcare provider or conversations that don’t address all of your needs or concerns may put you at risk for worsening symptoms or disease progression. This guide features questions to start thinking about your daily and long-term challenges and spark discussions with your care team.
Wilson disease care might include visits to a variety of healthcare providers, which can be confusing or overwhelming. This resource was designed to help you learn more about the different types of specialists and how to work with your current healthcare provider to establish a collaborative care team.
Staying on treatment requires effort and takes planning and dedication. This resource may help you adhere to your treatment plan by tracking when you’ve taken your medication, if you’ve missed or skipped a dose, and when the next dose is coming up. It also features tips and tricks on how you can better stay on track with your treatment.
Establishing a list of personal goals can inspire, motivate and help you to express what you want your ideal life to look like while living with Wilson disease.
How do you feel today?
Tracking your Wilson disease symptoms on a regular basis is essential to understanding your disease and identifying how it is improving, staying consistent or potentially progressing.
Wilson’s disease care may include visits to a variety of doctors, which may often be confusing or overwhelming. We are here to help. Learn more about the different types of doctors and how to work with your current doctor to establish a collaborative care team.
Establish a list of personal and/or treatment goals to inspire, motivate, and help you express what you want your ideal life to look like while living with Wilson’s disease. This resource provides helpful tips in creating a vision board, a visual representation of your goals and dreams for the future. By creating a vision board, you are making the choice to take action, and design a life living with Wilson’s disease on your own terms.
Delayed or un-productive discussions with our doctors may put us at risk for worsening symptoms or disease progression. However, understanding Wilson’s disease can be confusing and often we do not even know what questions to ask. This tool features questions that are a great starting point to spark useful, action-oriented discussions with your care team.
