People with Wilson's disease coordinate between hepatologists, neurologists, and geneticists while managing copper-lowering treatments that require precise monitoring. When you have a rare genetic disorder that most doctors don't understand, finding knowledgeable care becomes critical.
Solace Wilson's disease advocates are experienced medical professionals who:
Your advocate ensures expert management of this rare condition.
Best of all, most patients pay nothing out of pocket.
Ron S.
Specialties:
Experience:
Ron is a patient advocate certified by UCLA. He excels in medical billing, insurance issues, and healthcare navigation.
Malika M.
Specialties:
Experience:
Malika is a licensed clinical social worker with 12 years of experience specializing in geriatric care and community education.
Jeff B.
Specialties:
Experience:
Jeff is an EMT with 31+ years of experience. He focuses on medical bill management and patient advocacy.
Michael Y
Specialties:
Experience:
Michael is a medical doctor with 15+ years of experience specializing in patient advocacy, case management, and navigating healthcare.
Wilson's disease affects liver, brain, and other organs requiring multiple specialists. Your advocate finds hepatologists familiar with Wilson's, coordinates with movement disorder neurologists, and ensures all providers understand this rare disease. They build a knowledgeable care team for comprehensive management.
Copper chelation therapy requires careful monitoring to be safe and effective. Your advocate coordinates regular copper level testing, monitors for treatment side effects, and ensures proper dose adjustments. They help maintain the delicate balance of copper removal without causing deficiency.
Wilson's disease is genetic, requiring family testing to find affected relatives. Your advocate can help coordinates genetic counseling for families and ensure early detection in relatives. They help protect your family from this inherited condition.
Mark L.
08/2024
Sara C.
02/2025
Susan R.
08/2024
Jeri Q.
02/2025
Dylan M.
12/2024
David P.
02/2025
With Solace, you get both a patient advocate and a supporting physician, which we refer to as your “care team”.
Your advocate will be there to manage the day to day aspects of your care: coordinating with doctors, researching potential solutions and communicating updates to you.
Your supporting physician can unlock resources for you and your advocate that might otherwise be out of reach.
Medications like penicillamine and trientine can cause serious side effects requiring careful management. Solace advocates monitor for allergic reactions and kidney problems, coordinate zinc therapy as alternative or addition, and manage the switch between medications when needed. They ensure consistent medication supply despite shortages, coordinate with specialty pharmacies, and track treatment response. Your advocate optimizes copper removal while minimizing side effects.
Wilson's disease can cause tremors, dystonia, and psychiatric symptoms requiring specialized care. Solace advocates coordinate with movement disorder specialists, manage psychiatric medications that won't worsen Wilson's, and ensure neurological symptoms are properly treated. They help distinguish Wilson's symptoms from medication effects, coordinate physical therapy for movement problems, and support families through behavioral changes. Your advocate addresses the complex neurological impact.
Severe liver disease from Wilson's may require transplantation, which can also cure the disease. Solace advocates coordinate transplant center evaluation, ensure Wilson's-specific considerations are addressed, and navigate the complex listing process. They manage copper control while awaiting transplant, coordinate post-transplant monitoring, and ensure smooth transitions. Your advocate guides you through transplant when medications aren't enough.
Wilson's disease requires lifelong treatment with serious consequences if stopped. Solace advocates ensure treatment adherence support, coordinate regular monitoring throughout life, and manage care transitions through life changes. They help with pregnancy planning and management, coordinate care during medical procedures, and ensure treatment never lapses. Your advocate provides consistent support for lifelong copper management in this rare disease.