Huntington’s Disease (HD) is a rare genetic disorder that causes nerve cells in the brain to break down. The disease is so rare—an estimated 30,000 Americans are known to have HD, including 1,400 people in the Washington, D.C., Virginia and Maryland area. Many HD patients often end up traveling long distances to receive specialized care.
Now, for the first time, Montgomery County residents can receive expert HD care close to home thanks to the new HD clinic at MedStar Montgomery Medical Center. The community-based clinic is part of the Huntington Disease Care, Education and Research Center at MedStar Georgetown University Hospital. Launched in collaboration with MedStar Georgetown University Hospital, the clinic offers expert care and support to HD patients and their families from pre-diagnosis through late stages of the disease. Patients are also offered the opportunity to participate in research if they are interested in doing so.
“A lot of medical professionals learn about HD in training, but they may only see one or two cases in their entire career,” explains Fahd Amjad, MD, a neurologist and clinical co-director of the Center. “We see several patients each month.”
Experience and Expertise for Better Disease Management
HD is a progressive neurological disorder that causes a range of physical and behavioral symptoms, according to Karen Anderson, MD, a neuropsychiatrist and director of the Huntington Disease Center. Although there is no cure for HD, treatment can help manage symptoms—a message Dr. Anderson wants patients, families and even referring physicians to understand.
“Unfortunately, some physicians have the belief that there is nothing to do for Huntington’s, so they don’t refer people for specialized care,” she says. “We want people to know that there is always something you can do for someone with Huntington’s disease, no matter what their stage of disease.”
A Community of Care Under One Roof
At the new MedStar Montgomery clinic, Dr. Anderson leads a team that includes psychiatrists, neurologists, genetic counselors, a social worker, a neuropsychologist and speech
and physical therapists who see patients once a month. Bringing so many HD specialists together under one roof is more convenient for patients and leads to more coordinated care, says Dr. Amjad. “A lot of people with HD end up with very fragmented care,” he explains. “We’re providing care as a team,” agrees Hope Heller, the Center’s full-time social worker. “Before a patient leaves for the day, everyone has talked and we all know what the plan is.” “We treat the whole person, and the family is really an extension of our patient. We’re here for everyone.”
For more information about the Huntington Disease Care Education and Research Center, visit MedStarGeorgetown.org/Huntington or call 202-444-0816.