Stories

Patient Videos

Stories of perseverance, education and strength

Carter and his mother and caregiver, Ann, tell their story about the long and frustrating journey toward Carter’s diagnosis, before he was even a teenager. He was experiencing incredibly burdensome physical and psychiatric symptoms and it wasn’t until after a multitude of tests and a long period of having no answers that they finally received a Wilson disease diagnosis.

Carter: Advocating for Yourself

In the wake of Carter’s Wilson disease diagnosis, Carter and Ann talk about the difficult changes they had to make and how they moved forward once they were better able to understand his condition and begin treatment. Despite continuing to face challenges related to his Wilson disease, Carter and Ann discuss the importance of advocating for yourself.

Ed: Late Diagnosis

Ed waited 50 years for a diagnosis, and details the effect Wilson disease had on his family and career and his hope for patients to get diagnosed sooner. Dr. Michael Schilsky and Dr. Amar Patel also discuss the effects Wilson disease can have on the liver and the neurological and/or psychiatric symptoms patients with Wilson disease may present with.

Jareb: Flexible Career

Living with Wilson disease since he was a young boy, Jareb has learned about the impact of his symptoms and how to plan around the major lifestyle changes his condition presents. Jareb is pursuing his passion of photography, which allows him to have a flexible work schedule to help manage his Wilson disease.

Jessica: Diet Management

Jessica, who maintained a healthy lifestyle, was caught off guard when a routine physical ultimately led to a Wilson disease diagnosis. Although she was grateful for an early diagnosis and made a plan with her healthcare team, Jessica struggled with diet modifications and monitoring the copper content in foods she ate. Today, she continues to monitor her body while raising her family and encourages others living with Wilson disease to take it one day at a time.

Your Journey

Consider creating a Journey Map, which describes your specific journey as a Wilson disease patient or caregiver.

Wilson disease can affect every aspect of your life and leave you feeling many different emotions. This activity will illustrate the stages of living with Wilson disease and help identify resources that could be useful. This exercise also allows you the opportunity to reflect on your own personal journey and identify how your experience with Wilson disease has changed over time.

View Journey Map

Why a Journey Map?

Wilson disease can affect every aspect of your life and leave you feeling many different emotions. This activity will illustrate the stages of living with Wilson disease and help identify resources that could be useful. This exercise also allows you the opportunity to reflect on your own personal journey and identify how your experience with Wilson disease has changed over time.

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