Rare Disease Report

Triple Threat: HD Patient Researches, Educates and Advocates

JUNE 27, 2017
Mathew Shanley
At 25, Jeff Carroll was diagnosed for Huntington’s Disease (HD).
Carroll’s mother and grandmother had both died prematurely from the hereditary disease, and when his doctor learned the results of the test to see if the third generation carried the same gene mutation, he double-checked to make sure his patient still wanted to know the results. He read them out loud.
HD, a hereditary brain disorder, results in the progressive loss of both mental and motor control. Symptoms typically appear between the ages of 30 and 50 years, and progressive over a 10-to-25-year period until the patient’s eventual death. The combination of worsening symptoms led to Carroll’s mother wearing socks on her hands in her last days in a nursing home. She died at 54.
Carroll, a high-school dropout is described as both “smart and stubborn” by his now colleague Dr Ed Wild. The day of his diagnosis, when he was a sophomore at the University of British Columbia, he left the physician looking for a job. He wanted to prolong lives; specifically, those of his 3 younger siblings who have the same gene mutation.
Carroll worked his way toward a Ph.D., did postdoctoral research at Harvard Medical School, and now works as a tenured psychology professor at Western Washington University. In 2011, he co-founded the website HDBuzz, which provides patients and families a forum to discuss the science surrounding HD.
“I’d be lying if I said there weren’t times I’m scared,” Carroll said in the Seattle Times. “But I find it less damaging to my life to be directly engaging as opposed to running away.”
After his diagnosis, Carroll just wanted to play a part; he wanted to help. He began working in the UBC lab of Dr. Michael Hayden, one of the world’s most distinguished Huntington’s disease researchers, where he would spend 7 years as he made his way through graduate school.
After realizing his potential lifespan, and considering dropping out before earning his graduate degree, Carroll decided to continue his research. He now works as a professor at Western Washington University, and his most recent work was funded by $800,000 grant from the CHDI Foundation.
Carroll has been invited by greater research institutions, but stays by choice, mostly for family and quality-of-life reasons, per his sister Stacey.
“His work is a good fit and really good complement to all the other things going on. The fact that it’s not at Harvard doesn’t mean that much to us. No one investigator is going to come up with a cure. It takes a village,” said Robert Pacifici, chief scientific officer of the nonprofit CHDI Foundation, which is dedicated to developing drugs that slow Huntington’s progression.
It may take a village, but with every passing day, it appears Carroll resides as the village leader. Wild, who diagnosed him all those years ago, endearingly refers to him as “Triple Threat” for his resistance to being a victim, or only a patient.
He’s a patient, an educator, and an advocate. Jeff Carroll is a triple threat.

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