People with Huntington's disease face progressive movement, cognitive, and psychiatric symptoms while navigating genetic testing, family planning, and the challenge of finding knowledgeable providers. When you're dealing with a rare genetic condition that affects your entire family, expert guidance becomes essential.
Solace Huntington's disease advocates are experienced medical professionals who:
Your advocate ensures comprehensive care through every stage of HD.
Best of all, most Medicare patients pay nothing out of pocket.
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Huntington's requires specialists who understand this complex disease. Your advocate finds HD-experienced neurologists, coordinates between movement and psychiatric specialists, and ensures all providers understand HD's unique challenges. They build a knowledgeable care team for comprehensive HD management.
HD causes movement problems, mood changes, and thinking difficulties needing coordinated treatment. Your advocate helps manage chorea and movement symptoms, coordinates psychiatric care for depression or irritability, and ensures cognitive changes are properly supported. They address all aspects of HD together.
HD affects entire families through genetics and caregiving demands. Your advocate coordinates genetic counseling for at-risk relatives, helps families understand inheritance patterns, and connects caregivers with support resources. They ensure families face HD together with proper support and information.
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.
Specialized Huntington's Disease Centers provide comprehensive care from experts who truly understand HD. Solace advocates identify nearest HD centers or clinics, coordinate referrals and travel if needed, and ensure local providers follow HD center recommendations. They facilitate clinical trial enrollment opportunities, connect you with HD research programs, and maximize access to specialized expertise. Your advocate connects you with the best HD care available.
HD symptoms require careful medication management balancing movement, psychiatric, and cognitive effects. Solace advocates coordinate medications for chorea without worsening other symptoms, manage psychiatric drugs that don't increase movement problems, and monitor for dangerous drug interactions. They work with specialists on tetrabenazine or deutetrabenazine use, adjust medications as HD progresses, and ensure comprehensive symptom control. Your advocate optimizes complex medication regimens for best quality of life.
HD's progressive nature requires planning while cognitive function allows informed decisions. Solace advocates help establish advance directives specific to HD, coordinate legal planning while capacity remains, and plan care transitions before they're urgently needed. They discuss feeding tube and end-of-life preferences, ensure wishes are documented and communicated, and support families through difficult planning. Your advocate helps you maintain control over future care.
HD families face painful decisions about genetic testing, reproduction, and informing at-risk relatives. Solace advocates coordinate genetic counseling for testing decisions, explore reproductive options like IVF with PGT, and support family communication about HD risk. They help young adults decide about predictive testing, coordinate psychological support for test results, and ensure families have resources for genetic decisions. Your advocate provides compassionate guidance through HD's genetic challenges.