Feb. 16, 2009 issue
Physicians treat Amish cystic fibrosis patients within community rules
By Celeste Kennel-Shank Mennonite Weekly ReviewOne of Chris Schwartz’s cousins died at age 20 because of cystic fibrosis. Another, at 12.
Then, two of his children were born with the disease, Chris, now 12, and Mary, 11.
“We’ve spent a lot of time in the hospital with those two,” Schwartz said.
The family, who are Amish, found Dr. Ran Anbar of the State University of New York Upstate Medical University in Syracuse. They’re now one of dozens of Amish families receiving treatment for their children with cystic fibrosis, an inherited disease affecting 30,000 people in the United States.
With the treatment, it’s possible his children could each live to be 80, Schwartz said.
Both the SUNY center, and the Akron (Ohio) Children’s Hospital Lewis H. Walker M.D. Cystic Fibrosis Center, have accommodated Amish patients in several ways.
Since arriving at the SUNY Upstate Medical University Pediatric Cystic Fibrosis Center in 1994, Anbar had seen a number of Amish and conservative Mennonite patients with cystic fibrosis.
With the first Amish patients he saw, “the care was below what I would have liked it to have been,” he said.
Some of the patients didn’t know the extent of the treatments available, or lacked insurance, or both, Anbar said. For Amish patients, the lack of electricity in their homes was a challenge.
Anbar and a colleague undertook a study, concluding that when doctors worked with Amish and conservative Mennonite families to make treatments more available, it improved their children’s quality of life. The study was published by BioMed Central in the Jan. 15 issue of the journal BMC Pediatrics.
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