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CSE alum raising awareness about rare disease

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Friday, January 11, 2019

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Jocelyn Wong refuses to be limited by her disease. In fact, she believes the reason she was born with Morquio A Syndrome, a rare form of the metabolic disorder mucopolysaccharidoses (MPS), is to raise awareness.

"I am one of only 11 people currently living in New Jersey with Morquio A," explains Wong, a College of Saint Elizabeth graduate who speaks three languages and moved to the United States from Hong Kong before the age of 12.

Aside from weekly four-hour infusions of an enzyme replacement therapy, Wong endures countless testing and sees a litany of doctors (geneticists, orthopedics, cardiologists, pulmonologists, audiologists and more).

Yet, she still finds time to do what she loves – volunteer work.

"With my multicultural background, I have been able to build a bridge between the MPS community and the Asian community," explains Wong.

She translates MPS disease information in medical journals from English to Chinese, counsels Asian families living with MPS disorders and even helped to establish the MPS Rare Diseases Care Center in China. She also attends conferences relating to her disease throughout the United States, China Taiwan, Hong Kong, Australia and Germany.

"I don't want to see anyone walk the road like mine," says Wong. "I was born in Hong Kong and understand that the language barrier makes understanding information about this disease even more difficult. This is why I'm willing to help others."

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Author: Mary Colleen Robinson
4.0 from 1 vote
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