Jeffrey Bardsley, 23, knows no limits when it comes to pursuing his dreams.
“A great source of my strength comes from the constant support of my family and friends,” said Bardsley, a Hunter syndrome patient, “and my personal ambition to minimize the disease’s impact on my life. There’s nothing it can do to hold me back.”
Bardsley was diagnosed with Hunter syndrome at age 4. The syndrome is one type of a group of inherited metabolic disorders called mucopolysaccharidosis (MPS). It is a rare genetic disorder, more common in males, that occurs when an enzyme needed to break down complex carbohydrates is either missing or malfunctioning.
“I was aware early on that I had a genetic disorder, but it wasn’t until middle school that I decided to become more proactive and do a science fair project on it, really learning more,” said Bardsley.
Born in Washington, D.C., Bardsley grew up in northern Virginia, pursuing his interests in soccer and drama. He is a 2009 graduate of the University of Richmond, where he earned his bachelor’s degree in business administration. He will return to the university in the fall to pursue his master’s in accounting and become a Certified Public Accountant.
“As far as I’m concerned, having Hunter’s is just something I’ve had to live with,” he said. “I never let it be an obstacle, in sports or in school. My obligation is to do everything I can to manage the detrimental effects of the disease and maintain an active lifestyle.”
In 2005, while a senior in high school, Bardsley was one of 12 patients selected to participate in a clinical trial at the University of North Carolina at Chapel Hill, testing ELAPRASE, an enzyme replacement therapy designed to treat the underlying cause of Hunter syndrome. ELAPRASE was developed by Transkaryotic Therapies Inc. (TKT), which was acquired in July 2005 by Shire Human Genetics Therapies Inc. (Shire HGT), based in Cambridge. The Food and Drug Administration gave its approval for the drug in July 2006.
“I had no qualms going into the trial, and I have no regrets,” said Bardsley.
Bardsley has continued using ELAPRASE and receives weekly infusion treatments. The drug has been shown improve walking capacity in patients after one year of therapy.
“For me, it’s been more of a preventative measure, ensuring my symptoms don’t worsen,” said Bardsley.
Currently, there is no cure for Hunter syndrome, and treatment – including enzyme replacement therapy – mostly involves management of symptoms and complications.
“Long-term, I hope that there’s a cure,” said Bardsley. “In the meantime, I want new patients to have their symptoms detected earlier and start a treatment path that will minimize their suffering.”
Bardsley believes in the power of patient advocacy and has been involved in advocacy with the National MPS Society.
“I’d like to become more involved after grad school, lobbying for more research funding for companies like Shire,” he said. “I’ve been very impressed with Shire’s attitude and motivation to make improvements in patients’ lives. It’s exciting, working together to try to find solutions.”
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