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Topeka genetics clinic helps Amish, Mennonite, rural residents

Copyright 2014 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.The Associated Press
Wednesday, October 30, 2013 12:01 am
TOPEKA — A blue ribbon carefully taped between two posts was neatly cut Saturday morning, officially opening the new Community Health Clinic in Topeka, although the independent health office has been seeing patients since September.Nearly five years in the planning, the clinic is unique, its manager says, specializing in treating and understanding the rare medical needs of many patients who suffer genetic disorders. The clinic is on Lehman Street on the northern edge of town, sharing a building with a Topeka physician, Dr. John Egli.

“We're a genetics clinic, aimed at helping the Amish, Mennonite and rural community, especially those with metabolic disorders,” said Jared Beasley, operations manager for the facility. Founders of the clinic say the Amish tend to have an increased risk for having children with rare genetic disorders.

“There are a lot of what we call metabolic conditions, and the reason why is there is a lot them is because they are recessed conditions, meaning they happen when the parents are carriers for that condition,” said Dr. Zineb Ammous, a clinical geneticist and staff physician at CHC. “And because, obviously, the Amish tend to marry from within the same community, there is higher prevalence for genetic conditions.”

According to statistics provided by the clinic, northeast Indiana is the home to more than 35,000 Amish residents, and those communities tend to be home to a “disproportionately large number of children with inherited and non-inherited genetic disorders.”

In small communities, typically rare genetic and chromosomal disorders are somewhat more likely to be expressed. The bulk of the patients now coming through the clinic's doors are children.

Many of the conditions seen at the clinic are so rare they are almost unheard of in the general population. They include a host of metabolic issues that disrupt the normal chemical reactions that turn food into energy. That includes disorders such as galactosemia, a disease interrupting the body's ability to process galactose, a simple sugar. Galactosemia is caused by a mutation on a particular gene, and may cause life-threatening complications in newborns within a few days after their birth.

Another disorder, nonketotic hyperglycinemia, also known as NKH, is exceedingly rare in the general population but is now appearing with uncommon frequency among the plain population. CHC officials said one local family has two daughters identified with the once-rare disorder.

The first daughter was born in 2000, at a time when there were only 167 known cases of NKH across the globe. Since then, 16 more cases of the disorder have been documented in northeast Indiana alone. In fact, a 10-mile area of northern Indiana has the world's largest concentration of patients with NKH. Medical professionals are seeing dozens of other rare genetic diseases within the local population, as well, clinic officials said.

The Community Health Clinic manager said its mission is to help patients understand their conditions, treat them when possible and help mitigate the damage diseases would inflict if left untreated.

Similar clinics exist in Lancaster, Pa., and Holmes County, Ohio, two more major centers of Amish populations.

“We provide some counseling and diet management for the patient, so that they may get to the age of 20 and find they don't have irreversible heart and kidney damage,” Beasley explained. “And then they may not have the health crisis that tends to happen once or twice a year to these patients which put them in the hospital. So, preventing those type of things long-range really takes the cost out of health care. We're preventing the exacerbations, the irreversible damage, the long-term problems many of these conditions create when they're not tightly managed.”

While the clinic is an independently operated organization, it has created a relationship with Parkview Health and Parkview LaGrange Hospital, as well as other health care institutions in the state and Midwest.

Though many of the conditions that come through the clinic's doors are incurable, the conditions may be manageable by controlling a patient's diet and ensuring he or she understands the disease. That can avoid a real medical crisis.

“We're aimed specifically at prevention of crisis due to genetic disorders,” Beasley said. “Part of the need is not only the volume of patients that experience these kind of conditions, it is also an economic need. By managing these genetic disorders, we can significantly reduce the need for what I'll call crisis intervention or expensive hospitalization, or the need for travel to large specialty clinics outside the area.

“These kind of crisis can be prevented through good management,” he said, “and that's part of what we're here to help with.”


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