Finding normal; Teen battles rare enzyme disorder—San Antonio Express News
By: September 24, 2001posted on:
(originally published in San Antonio Express-News on Sept. 24, 2001)
When Tiffany House was growing up, she was often sick. But in that resilient way that children adapt to their bodies and their immediate world, she thought it was normal - normal for her.
Today, she weighs 90 pounds and, unable to walk, uses a wheelchair. She struggles with weak muscles and impaired lung function and is tied to weekly infusions of an experimental therapy. Yet the 18-year-old attends UTSA, deeply determined to lead a normal life - normal for her.
For Tiffany, enzyme replacement therapy is the only thing staving off further muscle deterioration and death. And right now, the future supply of the particular transgenic enzyme she is on - produced using genetically altered rabbits - is in question. Treatment issues will be high on the agenda at an international conference of scientists and patients originally set to begin Friday at the Holiday Inn River Walk, now postponed due to the Sept. 11 attacks. The meeting will be sponsored by the Acid Maltase Deficiency Association, founded in 1995 by Tiffany’s parents after she was diagnosed with the deficiency.
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