In addition to their neat farms and tidy gardens, their penchant for quilts and chicken potpie, and their work ethic and thriftiness, the Pennsylvania Dutch may share another quality.
A dangerously high cholesterol level.
A unique new screening effort is trying to find people with an inherited disorder that leads to the high level, and an aggressive cardiovascular disease that results from it.
The disorder, called familial hypercholesterolemia, or FH, can cause heart attacks, heart disease and strokes at an early age.
The Heart Group of Lancaster General Health and the University of Pennsylvania are both reaching out to find patients with FH, which may be more common here among those with German Swiss roots.
The goal is to get them into treatment, identify relatives who might be at risk through family screening, and possibly even do genetic testing to confirm the problem and offer a customized treatment.
This spring, LG Health began sending out letters to almost 3,000 local patients who were identified as being at risk for the problem, encouraging them to see their family doctor or a cardiologist.
The letters were sent to patients identified through the LG medical record system as having an LDL, or low-density lipoprotein, reading of 190 or higher. An average reading of LDL, also known as the “bad cholesterol,’’ is about 130.
“If they don't get treated, their outcomes are very poor,’’ said Tina Davis, a nurse practitioner in The Preventive Cardiology & Apheresis Clinic at the Heart Group. “This is about reaching out to the public, making them more aware and helping them to understand they need treatment.’’
Roger Kerstetter is one of the thousands of local residents who received such a letter. The 55-year-old New Holland resident already was being seen by a physician for his high cholesterol, a problem he's known he's had since he was in his 30s.
Kerstetter had parents who both had high cholesterol and died from heart attacks and/or strokes in their 70s. He had an uncle who died of a heart attack in his 50s. He had a grandfather with the last name of Yoder and has German roots.
Kerstetter also had an LDL reading that was close to 300 at one point.
“I needed help,’’ he admitted.
The suspicion is Kerstetter and others who have Pennsylvania Dutch roots could be among what's known as a “founder population’’ for FH.
A founder population is a group of people descended from a relatively small group, who often intermarry and stay together as a group.
Such populations can have higher concentrations of genetic disorders. The Ashkenazi Jews, for example, are a founder population for Tay-Sachs disease, a degenerative nerve disorder.
FH already has been identified in other founder populations, including the Afrikaaners in South Africa, the Christian Lebanese and the French Canadians, said Dr. Daniel Rader, a professor and director of the preventive cardiovascular medicine and lipid clinic at the University of Pennsylvania.
In the general population, FH traditionally was believed to be found in 1 in 500 people, but recent studies have suggested it is more common, perhaps found in 1 in 250 people, Rader said.
In the Amish and Pennsylvania Dutch, the rate could be even higher, Rader said.
Doctors already know that Amish people have a much higher rate of high cholesterol, due to a specific genetic mutation that is known to have originated in German-speaking Switzerland, the original home of the Amish, Rader said.
More studies are needed, Rader said, to determine the rate of FH in the Pennsylvania Dutch community, and determine if it is a founder population.
In the meantime, doctors do know that if a child's mother or father has a gene mutation causing FH, each of their children has a 50 percent chance of inheriting it.
If left untreated, 50 percent of men by the age of 50 and 30 percent of women by the age of 60 with FH will suffer a heart attack and possibly die, Davis said.
People with FH cannot control the disease with diet and exercise alone.
“They can be as skinny as a rail, run five miles every day, eat grass and still have high cholesterol,’’ Davis said.
The University of Pennsylvania Preventive Cardiology program, directed by Rader, also is in the process of identifying patients in its system who have high LDL levels, in a separate effort similar to the one at LG Health.
Both LG Health and Penn are hoping to enroll people with the high readings into what is called a cascade screening project.
The way that screening operates, once someone is identified with a high LDL reading, doctors check that person's first-degree relatives — parents, siblings and children — as well as extended family members to see if they have high LDL readings as well.
The Penn program also is going to do genetic testing, to look for the specific gene mutations that cause the high LDL readings, in patients. This will be done at no cost to patients or their insurance.
The hope is that if people know they have the mutation, they will help get their family members into screening. Physicians then can customize a treatment program for patients.
“There are a surprisingly large number of people who have very high LDL, or FH, but don't know they have it,’’ Rader said. “It is particularly important to identify these people because we have such effective therapies (cholesterol-lowering drugs) that essentially reduce the risk of heart disease back to the normal range.’’
Rader has both a professional and a local interest in the project. He's from Lancaster County, having grown up in Rohrerstown and graduated from Hempfield High School in 1977. His late father, the Rev. Glenn Rader, was a founding pastor of the Church of the Apostles United Church of Christ and Homestead Village on Marietta Avenue.
Kerstetter is now seeing a cardiologist at the Heart Group and is on a new type of cholesterol-lowering drug. The bakery director at Shady Maple Market in East Earl, he also is trying to exercise and watch his diet, though pastries aren't his weakness. Cheese and ring bologna are.
He is also trying to persuade his two grown sons to have their cholesterol checked.
And he's spoken to extended family members about the problem, and found that he has cousins who have the same issues as he does.
“We could do all the right things and eat all the right foods and it still would not impact it,’’ he said, noting several of his relatives also are on cholesterol-lowering drugs.
“We all realized we're not bullet-proof anymore.’’