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Issue Date: July 2009

And Another Thing

Heide Aungst
When Dr. Heng Wang arrived in Geauga County in 2002 to work with the DDC Clinic for Special Needs Children, he faced an Amish population with kids who were handicapped, in some cases even dying, from genetic and metabolic diseases that remained a mystery to even the region’s best specialists.

We profiled Wang (“Breaking Through,” February 2003) soon after his arrival, as he made house calls. The children pictured with him in that article had remained undiagnosed — until this year.

Wang discovered two of the children have a form of dopa-responsive dystonia. He made the diagnoses after discovering a similar form of dystonia, a condition affecting movement, in a non-Amish boy. Having been in a wheelchair since age 5, the boy was walking within months after starting the medication Wang prescribed.

That’s when Wang thought perhaps the Amish children he had struggled to diagnose might benefit from the same medication. One Amish boy had become so unsteady, he had to wear a helmet to protect his head from his many falls.

“The same day we started [the medication], you could see a difference already,” says Mary Lou Miller, the boy’s mother. “He had so much control in his legs.”

The story of that diagnosis is just one of the many medical successes that have happened at the DDC Clinic since our article. Wang has now diagnosed more than 60 rare metabolic and genetic diseases and has developed genetic tests (including the discovery of new genes) for more than half.

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