Charles Sabine’s Story: Huntington’s Disease

In 2005 the NBC war correspondent Charles Sabine made the life-altering decision to face up to his family history of Huntington’s disease and undergo genetic testing. The odds, he knew, were 50-50 that he, too, had the gene and would eventually develop the progressive neurological condition. When the neurologist gave Mr. Sabine the chilling results, he said there was “nothing” Mr. Sabine could do. But Mr. Sabine has been proving him wrong ever since. “The reality is that there is everything I can do,” he said at the University of Cincinnati during a visit in 2012. “The problem is finding the time to do it all.”

In a presentation that soared from heartbreak to hope, Mr. Sabine put a face on Huntington’s disease that will not likely be forgotten by those in attendance. Mr. Sabine, who has emerged as the global spokesman for Huntington’s disease, challenged his listeners to banish the word “incurable” from their vocabularies when speaking or thinking about disease in general and Huntington’s in particular. It is within the reach of scientists, he said, “to change what is perceived as unchangeable, because the human spirit is capable of anything.”

Watch a podcast of Charles Sabine’s Sept. 27, 2012 lecture >>

Mr. Sabine’s visit was initiated by Peter Stambrook, PhD, Professor in the Department of Molecular Genetics, and sponsored by the Fellows of the Graduate School and Center for Clinical and Translational Science and Training (CCTST). His presentation held special resonance for patients, clinicians and researchers affiliated with the James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders at the UC Neuroscience Institute.

Huntington’s disease affects an estimated three to seven of every 100,000 people of European ancestry, according to the National Institutes of Health. Its unforgiving genetic component means that a child of a parent with Huntington’s has a 50 percent chance of inheriting the gene and, ultimately, the disease.

Mr. Sabine (pronounced SAB-BINE), 52, who lives in England, survived dozens of missions as an award-winning correspondent in war-torn nations including Bosnia and Iraq and once had an AK-45 pointed at his heart and a grenade held to his head. “My profession exposed me to an unnaturally large number of dead and injured people,” he reflected. “More than a dozen wars, five revolutions, four earthquakes, and more suicide bombings than I could count left me with more visions of death than anyone would wish for.”

His journalistic experience prepared him for Huntington’s by illuminating not only the fragility and cruelty of life but also mankind’s potential for hope and heroism.

Mr. Sabine was in the heart of his career in 1994 when he received the news that his father had a disease that he, Charles, had never heard of. “From that moment, every single action, performed by every one of us in my family, would be colored by that news,” he said. “The words that seemed most often applied to it were incurable, untreatable.”

Years later, Mr. Sabine’s brother, an Oxford-trained lawyer, developed the disease. Whereas his brother once practiced at a prestigious law firm, Mr. Sabine said, “now, before meeting his neurologist, he practices walking in a straight line, because he knows she will ask him to do it, and it is very difficult for him.”

Although Charles Sabine thus far has shown no symptoms of the disease, a part of him lives in fear. “Every time I take the dogs for a walk I wonder if this will be the time I realize my coordination has started to fade,” he said.

But self-knowledge has also meant power. While approximately 90 percent of Americans at risk of Huntington’s choose not to undergo testing, Mr. Sabine’s awareness has spurred a global call to action in which he speaks out against the prejudice and stigma surrounding HD;  helps explain scientific research to lay audiences; rallies Huntington’s families to engage in clinical trials and to raise their voice in support of research; and urges doctors and scientists to adopt the language and attitude of hope and to eliminate a word  — incurable – that he calls “utterly irrelevant, serving no purpose other than to induce despair.”

Mr. Sabine himself is among 200 volunteers worldwide who are participating in “Track HD” an ongoing international study led by University College London that aims to establish the best possible outcome measures for clinical trials in Huntington’s. Mr. Sabine also assisted with the drafting of the 2008 Genetic Information Non-Discrimination Act (GINA), which protects the rights of Americans with genetic predispositions from discrimination by employers or insurance agencies.

In short, hope is the message that Mr. Sabine strives to convey. He pointed to the dramatic strides in the management of HIV/AIDS, and he offered an anecdote from his reporting days in the Middle East.

“In 1991, after the Gulf War that did not remove Saddam, I went to the Iranian Border with Iraq after rumors that Kurdish refugees were spilling across it,” Mr. Sabine said. “What we found was a sea of humanity pouring over the mountains: a million people, mostly women and children, running from Saddam’s chemical attacks in the north of Iraq.

“It was winter, bitterly cold. And the sights would never have been believed had there not been a cameraman with me to record them. But the image imprinted in my mind until the day I die was one particular girl of about 12. She was clambering over the rocks, focused on survival, her face dripping with freezing mud. On her back was her younger sister, two or three years old, unconscious and barely alive. She had carried that child almost 90 miles.

“All humans are capable of far more than you can ever believe.”

— Cindy Starr

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