WASHINGTON, D.C. — Young people from Baltimore to Richmond impacted by Huntington Disease — a hereditary, progressively degenerative brain disorder that leads to death and has no cure — now have easy access to a broad range of support services, thanks to a pioneering international partnership spearheaded by the Huntington Disease Care, Education and Research Center at MedStar Georgetown University Hospital.
With support from the Griffin Foundation in Washington, D.C., and in partnership with MedStar Georgetown and The Huntington’s Disease Society of America, the British-based Huntington Disease Youth Organization (HDYO) has opened its first U.S. office at MedStar Georgetown.
“HDYO will offer events, online resources, connection with peers and one-on-one mentoring for youth up to age 25 and their families,” says Chandler Swope, director of youth services in the Mid-Atlantic region for HDYO.
“For a child of someone who has HD, there’s a 50 percent risk they will inherit the disease,” Swope says. “That’s a lot for a young person to carry, particularly as they watch the disease progress in the family member.”
A joint effort that MedStar Georgetown University Hospital and Georgetown University Medical Center (GUMC) launched two years ago, the Huntington disease center offers one-stop services for patients and families in Washington, D.C., Maryland and Virginia. The region is home to an estimated 1,400 people with HD and more than 9,000 people at risk of the disease.
In a single four-to-five hour visit to MedStar Georgetown, patients can see up to eight clinicians, including a social worker, neuropsychiatrist, neurologist, neuropsychologist and genetic counselor, as well as a physical therapist, speech and swallowing therapist, and occupational therapist. It is one of the only HD clinics anywhere to employ a full-time social worker.
Now, through the new partnership, HDYO will provide services that traditionally have not been available at HD clinics to help youth deal with the impact of having a parent with HD.
“Young people with a parent with HD not only must try to cope with the challenges of growing up, but often must serve as caregivers, while dealing with — and grieving over — their parent’s progressively declining physical, mental and psychological health,” says Karen Anderson, MD, director of the HD center at MedStar Georgetown and professor of psychiatry and neurology at GUMC. “As a result, these young people often experience depression, anger and sleep deprivation and the psychological impact of knowing you might inherit the disease can be devastating.”
HDYO will work with HD families at Georgetown, and at clinics at MedStar Montgomery Medical Center in Olney, Maryland and in McLean, Virginia. HDYO will also collaborate with other HD clinics in the Mid-Atlantic region to ensure that all impacted families can access services.
HDYO, which works with four youth workers in England, Scotland, Australia and Sweden hired by local HD associations in those countries, also provides a website at www.hdyo.org, available in nine languages. “A key focus of HDYO is to let youth and parents from HD families know they have somebody to talk to,” Swope says. They might be frightened to ask how to deal with a parent’s HD, how the disease might affect their own lives, and how to make decisions about their own futures, such as applying to college.”
HDYO was founded in 2012 by Matt Ellison, who was seven when his father was diagnosed with HD and 21 when he died.
Ellison, who provided a lot of caregiving for his father before he died at age 54, says that he created HDYO to improve educational resources and support services for young people in HD families throughout the world.
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