Clinic provides compassionate, multidisciplinary care for patients and families impacted by Huntington’s disease.

Vanderbilt’s Huntington’s Disease Program: A Beacon of Hope and Comprehensive Care

Vanderbilt Health’s Huntington’s Disease Program represents a significant collaboration between the Divisions of Movement Disorders and Cognitive and Behavioral Neurology, serving as both a treatment center and a source of reassurance for patients and families affected by Huntington’s disease (HD). Located at Vanderbilt University Medical Center, this program not only focuses on Huntington’s disease but also encompasses other complex movement disorders such as multiple system atrophy (MSA) and progressive supranuclear palsy (PSP).

This comprehensive approach has garnered recognition from prestigious organizations in the field, earning the program the designation of a “Center of Excellence” from the Huntington’s Disease Society of America and Mission MSA. Additionally, it has been recognized as a “Center of Care” by CurePSP, underscoring its commitment to high standards in patient treatment and support.

The program is co-directed by Dr. Amy Brown, an assistant professor of Neurology, and Spencer Diehl, LCSW, a seasoned social worker. Dr. Brown’s research is pivotal, focusing on neurological disorders that include HD, MSA, and PSP, allowing her to integrate the latest scientific advancements into clinical practice. “The ability to treat patients experiencing each of these disorders under one roof is incredibly rewarding,” Dr. Brown states, emphasizing the program’s commitment to interdisciplinary care.

An attractive feature of the Huntington’s Disease Program is its assemblage of specialists, which includes neurologists, speech therapists, specialty pharmacists, genetic counselors, and social workers. This multidisciplinary team collaborates to offer holistic care that addresses not only the medical aspects of the diseases but also the psychological and social challenges faced by patients. The chronic nature of Huntington’s disease often manifests as significant psychological stress, making support services, such as those offered by Diehl, essential.

Diehl notes that many patients grapple with anxiety regarding their genetic predisposition, particularly given that symptoms typically emerge in midlife. “There’s a psychological toll in waiting for the inevitable onset of symptoms,” he explains, highlighting the emotional labor faced by individuals from families with a history of HD. The complexity of these emotional reactions sometimes deters patients from seeking early intervention or genetic testing, leading to a gap in care.

To mitigate these challenges, the Huntington’s Disease Program emphasizes the importance of education and research involvement. It actively encourages participation in clinical trials, thus enabling younger patients—potential gene carriers—to engage with the research community without immediate disclosure of their genetic status. This strategy aims to familiarize families with ongoing scientific developments and treatment options, fostering a proactive rather than reactive approach to the disease.

Dr. Brown indicates a possible shift in paradigm regarding the treatment of Huntington’s disease, suggesting that starting interventions earlier might yield better clinical outcomes. “If the treatments work, we’ve got to do it sooner,” she asserts, reflecting a broader understanding of the disease and the urgent need for ongoing research and development of effective therapies.

Moreover, Diehl emphasizes that participation in research offers families a means to contribute to the greater community, enhancing collective knowledge and understanding of Huntington’s disease. This integration of patient involvement in research not only aids in the progression of scientific understanding but also provides much-needed support and connection for families facing the realities of this debilitating disorder.

As Vanderbilt’s Huntington’s Disease Program continues to thrive, it stands as a model of comprehensive care that prioritizes patient wellbeing, encourages research participation, and fosters an informed and supportive community, paving the way for future advancements in treatment and understanding of Huntington’s disease and other related disorders.