MedStar Georgetown and Huntington’s Disease Youth Organization to Support Young People and their Families

Nineteen year old Brian Schmidt of Baltimore knows he is at risk for a disease he describes as "like Alzheimer's and Parkinson’s Disease mixed together." The genetically inherited condition is called Huntington’s Disease (HD). "It's important for more people to know about this disease; they need to know what's going on," said Brian. Brian is hoping to spread the word about HD, which he has a 50 percent chance of inheriting, and to interact with other young people like himself. People impacted by HD in their family live with the choice of getting tested and then the excruciating decisions that follow: work, marriage, children.

December 10, 2014

Brian Schmidt, 19 years old, Baltimore, Md. with father and neice.
Brian Schmidt, 19 years old, Baltimore, Md. with father and neice.

Nineteen year old Brian Schmidt of Baltimore knows he is at risk for a disease he describes as "like Alzheimer's and Parkinson’s Disease mixed together." The genetically inherited condition is called Huntington’s Disease (HD), and Brian watched it claim his father's body, mind, spirit and eventually his life.

"It's important for more people to know about this disease; they need to know what's going on," said Brian.

Brian is hoping to spread the word about HD, which he has a 50 percent chance of inheriting, and to interact with other young people like himself. People impacted by HD in their family live with the choice of getting tested and then the excruciating decisions that follow: work, marriage, children.

MedStar Georgetown University Hospital's Huntington Disease Program is now connecting young people like Brian with a group called Huntington's Disease Youth Organization (HDYO). HDYO, supported by MedStar Georgetown and Huntington's Disease Society of America (HDSA), provides support services to young caregivers impacted by HD. According to HDSA, an estimated 80,000 are impacted by HD in America, and HDYO, called "H-D-Yo" for short, piloted the first professional program in the US to help young people under the age of 25 and their families who have been affected by this highly-stigmatized disease.

"In HD families, it's not that young people are being ignored; It's the fact there is so much going on with them at this stage of life," said Chandler Swope, LICSW and director of Youth Services at HDYO. "As most work is focused on the patients with HD, HDYO is a place for information that is accurate and age appropriate."

As a majority of young people impacted by HD experience the strenuous toll of caregiving to family members with HD, HDYO is committed to the overall wellbeing of young people. The extensive care required for HD, in conjunction with the lack of appropriate support for caregivers, can present emotional and physical issues, including isolation, depression self-harm and suicide in a family. HDYO's pilot project, which is based in Washington, DC and serves the Mid-Atlantic Region, provides one-on-one support, support for families, advocates in the community, and hosts events to allow young people, who facing similar circumstances in families with HD, to meet, have a safe space for dialogue and build supportive relationships.

Huntington's Disease is an inherited disease that has the power to take away one's control of memory, physical movement, emotions and more. Described as a slowly progressing movement disorder, psychological disease and neurological condition all in one, HD can cause a patient to experience grueling symptoms, such as involuntary movements, slurred speech, restlessness, drastic mood swings, forgetfulness, exhaustion, severe depression and intellectual difficulties. The demand and complexity of HD symptoms, which usually starts in one's 30's or 40's, and the long trajectory of a 15- to 20-year life expectancy can burden patients and their families, especially young people who are curious and concerned about their future. For 18-year-olds and older, genetic testing is available, but only 10-15 percent of young people will get tested for HD, according to Karen Anderson, MD and director of Huntington Disease Care, Education and Research Center (HDCERC). Dr. Anderson said that the lack of understanding around Huntington's Disease creates fear, which she said could be one reason young people decide not to get tested. Fear can also result from watching the slow progression of HD in a loved one's life.

"People are often so afraid to talk about Huntington's Disease. It's a very rough and devastating, family disease, but a lack of knowledge creates fear, which makes things so much harder later on. This is why it's important to participate and get involved in HDYO," Dr. Anderson said. "[HDYO] provides good information and good support."

"At the support group, it was nice to talk to people and tell them what it's like to have [HD] in your family," said Brian. "As more people talk about [HD], I'm hopeful [researchers and doctors] will find something to, not really slow [HD] down, but to cure [HD]."