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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.
There are several types of healthcare providers who can help you navigate Wilson disease. Having a multifaceted team consisting of a hepatologist, neurologist, speech pathologist, dietitian, genetic counselor and mental health professional will provide you with a holistic approach to care that can meet all of your needs.
Because Wilson disease directly affects the liver, a hepatologist is the most common doctor to help treat Wilson disease. Specializing in hepatic diseases and the organs that these conditions affect, a hepatologist diagnoses and treats diseases involving the liver, gallbladder, pancreas and more.
Due to the associated neurological conditions in Wilson disease, seeking care from a neurologist can help you manage your neurological symptoms. These include, but are not limited to, changes in speech, walking abnormalities, tremors, facial expression changes, drooling and weakness.
A speech pathologist is important because of the speech impairment and risk of lack of communication that may be associated with Wilson disease. Speech pathologists are able to perform assessments that will ultimately allow them to provide different methods to help facilitate communication.
Seeking assistance from a dietitian is crucial for someone diagnosed with Wilson disease, because sticking to a low copper diet is one of the most important steps in the initial phase of treatment. Dietitians can provide guidance on specific foods and drinks and help prescribe certain vitamins and dietary supplements that may be beneficial.
A genetic counselor provides families and individuals with another resource to understand the foundation of their Wilson disease. Once identifying the variants in an affected family member is complete, genetic testing is available for at-risk relatives and prenatal testing.
For many people, Wilson disease carries psychological symptoms including anxiety and depression. Managing a chronic condition such as Wilson disease can also cause stress, sadness and even anger. Working with a mental health professional can provide relief and assistance in how to manage these symptoms.
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Now that you understand the fundamentals of your care team, it is time to build your team and find support that will benefit you and your treatment of Wilson disease.
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