Inherited Physical Disorders and the Amish Baby Boom

Updated on June 19, 2018
Patty Inglish, MS profile image

Ms. Inglish has 30 years of successful experience in medicine, psychology, STEM courses, and aerospace education (CAP).

Steinbach Mennonite Heritage Village in Manitoba, Canada
Steinbach Mennonite Heritage Village in Manitoba, Canada | Source

Birth Defects in a Baby Boom

Several recent news stories have questioned the long-held belief that first cousins should not marry due to a higher likelihood of birth defects in their children. However, medical studies clearly show these stories to be spurious. Marrying a close relative does indeed increase the risk for birth defects in the next generation.

A set of studies obtained through medical treatment of America's Amish communities support additional evidence for this higher risk.

Source

Amish Populations Are Increasing

Misinformation and Statistics Corrected

Other harmful misinformation circulating about the Amish in America is that their communities are dying out and "rightly so." This is both harsh and not the case.

In fact, the Amish are experiencing a Baby Boom that is producing higher unemployment and a shortfall of jobs for the increasing numbers of Amish who need to work outside of their communities.

Health-wise, the rate of all cancers among the Amish is lower than that among the general population in America.

Among Ohio groups for example, the Amish have only 40% of the rate of cancer that other Ohioans suffer. Reference: "Amish Have Lower Rates of Cancer", Health News Digest; Ohio State University; January 2, 1010. And yet further, 5% of Amish studied have a gene that guards against cardiovascular disease.

The Amish also have a lower prevalence of Type II diabetes, because of physical activity, but some carry a gene that causes the disease and finding it leads to prevention. Furthermore, the rumors that suicide rates among the Amish are higher than in the general population is false - suicide rates are lower, especially in Pennsylvania.

One article I read harshly concluded that the Amish deserve to suffer and die, because they do not marry outside of Amish/Mennonite people, use makeup/jewelry or skimpy clothing, use alcohol and drugs, or have electricity/computers at home. That is more a commentary about the writer than about the Amish.

Health-wise, the rate of all cancers among the Amish is lower than that among the general population in America.

Limited Gene Pool

The gene pool is limited and Amish persons are not permitted to marry outside the Amish or nearby Mennonite communities. Even though the Amish are spread across 28 states in the USA, they and the Mennonites are still all related to fewer than 200 families that originally settled in America.

Researchers have discovered that certain Amish communities do not share the same birth defects, so members of these communities have tried to marry one another to avoid birth defects in the next generation. Many of the birth defects logged in Amish-dominant counties are those in which both parents carry a recessive gene for the defect and among the Amish, this is often because the parents are related, such as having the same great great grandfather or even a closer relative in common.

Gene splicing and stem-cell methods to repair genetic defects may be a solution in the future, but adding "outsider" individuals to strengthen the genetic pool is not possible.

In Pennsylvania, Dr. Kevin Strauss and Nancy Bunin, who is director of stem-cell transplants at the Children's Hospital of Philadelphia, work with the local Amish and Mennonites so that these people can avoid long journeys to places like Duke University in the North Carolina Research Triangle for testing and treatment. Their work has helped other people than the Amish - they discovered a gene that may cause sudden infant death syndrome (SIDS).

Some Amish Communities

A
Lancaster County PA:
Lancaster, PA, USA

get directions

A special clinic was started near here for Amish and Mennonite families whos children have birth defects.

B
Durham NC:
Durham, NC, USA

get directions

Research Triangle - three major universities and several counties.

C
Geauga County OH:
Geauga, OH, USA

get directions

Amish community with a greater than usual number of birth defects in its children.

D
Ontario:
Ontario, Canada

get directions

AS of 2013, 5000 Amish live in Ontario.

A traditional one room school, grades one through eight.
A traditional one room school, grades one through eight. | Source

Some Inherited Diseases Among the Amish

Maple Syrup Urine Disorder - The body processes proteins into poisons, the brain swells, and the baby dies; felt by some to be similar to cerebral palsy. One woman from Ohio was tested at birth for the condition and treated for the condition so that she would live. Certain physicians have taken up practice in Amish communities in order to study the birth defects prevalent in them and to offer hope of treatment and prevention.

An Ohio doctor found that some affected Amish babies' urine smelled sweet and rather like maple syrup. There was also vomiting, refusal to feed, lethargy, and developmental delays in the infants. The physician studied the research ad found that coma, seizures, and death might result. Old Order Mennonites seem to suffer the highest incidence of the disorder, about 1/380. Several other names are given to this disease, but Ketoacidemia is often used.

Initial treatment includes, a protein-free diet and IV treatment with saline fluid, sugars, and some fats. Hemodialysis is sometimes needed.

Genetic Registry for Maple Syrup Urine Disease.

Steinbach Mennonite Heritage Village in Manitoba, Canada

A
Steinbach Mennonite Heritage Village in Manitoba, Canada:
Mennonite Heritage Village, 231 Highway 12 North, Steinbach, MB R5G 1T8, Canada

get directions

Manitoba community.
Manitoba community. | Source

Frequency of Cohen Syndrome

Cohen Syndrome - Several children in Geauga County OH near Cleveland were found to suffer from this genetic condition. In one family in which the mom and dad were distantly related before marriage, three out of the five children born to the couple had Cohen Syndrome.

The three victims were all female. At age 24, one girl had the abilities of a 9-month-old infant. At age 21, another girl functioned at the level of a five-year-old. At age 18, another daughter could not rise from a prone position, functioning as an early infant of just a few months. Reference: Ohio Amish.

A family in Pennsylvania, had six children that suffered Cohen Syndrome. One died and five lived into the sixties, while their elderly mother still cared for them. Some of these persons were aided by retinal re-attachment surgery and were able to keep their eyesight.

The National Institutes of Health have reported that Cohen Syndrome includes

  • small head size (microcephaly)
  • MR/DD traits
  • morbid lack of muscle tone
  • eyesight problems
  • joint hyperflexibility and
  • facial structures that may prevent the mouth from closing.

Estimates are that only 100 to 1,000 cases of the condition exist worldwide, but Northern Ohio Amish Country holds over a dozen cases. See Cohen Syndrome Genetic Testing Registry.

Source

Amish Lethal Microcephaly

Amish lethal microcephaly (MCPHA) - This can be related to other disorders, like Cohen Syndrome, or it can exist on its own. The head of the infant is extremely small, because of underdevelopment of the brain.The head and face are misshapen and the liver is overly large.

Case studies report that the infant has seizures early on, is cold all the time, becomes irritable at ages 12 - 16 weeks, and dies before the age of one year. This type of microcephaly occurs only among the Old Order Amish people in Lancaster County, Pennsylvania; at the rate of 1 in 500 births.

Extreme microcephaly is not confined to the Amish - one very large family in Pakistan has their own brand of the condition, also fatal.

See the Holmes Morton Clinic for Special Children in Strasburg, Pennsylvania.

OTHER DISORDERS

  • Dwarfism (Ellis–van Creveld syndrome)
  • Crigler-Najjar syndrome - bilirubin builds up on the blood and can lead to death if not diagnosed at birth.
  • Troyer Syndrome - progressive spastic paraparesis (lower limb paralysis), dysarthria (leads to difficulty in speaking), and pseudobulbar palsy (inability to control facial movements); distal amyotrophy (muscle atrophy); motor and cognitive developmental delays; short heights; and skeletal abnormalities.Lifespan is average in length, though.
  • Others

Ohio Amish
Ohio Amish | Source

True and False Rumors About the Amish

  • They Amish regularly marry their first cousins - False.
  • They all speak only Pennsylvania Dutch - False
  • The Amish only work on the farm - False. Many Amish work in the outside community and are, in fact, affected by unemployment after the Great Recession.
  • They hate the American government and America - False. Even thousands of Pennsylvania Amish donated blood samples to the Clinic for Special Children in order to help the community and America as a whole toward better health. Help your fellow man is a tenet of their faith.
  • The Amish are not friendly - False; some are not, some are.
  • They don't pay pay taxes - False; they pay all but Social Security Taxes and thy do not collect Social Security Retirement. They also do not apply for nor accept public assistance (welfare); they do accept medical help, but often furnish medical offices with hand crafted furniture and supply food for the staff.
  • The Amish won't fight for their country in a war - True, but also true of Quakers. In addition, one can be even an atheist and a conscientious objector at the same time.

Sources

  • Amish Have Lower Rates of Cancer, Ohio State Study Shows. Ohio State University Medical Center. January 1, 2010. www.internalmedicine.osu.edu/genetics/article.cfm?id=5307 Retrieved June 17, 2018.
  • Do Amish Have Genetic Disorders? amishamerica.com/do-amish-have-genetic-disorders/ Retrieved June 19, 2018. www.bioone.org/doi/abs/10.13110/humanbiology.88.2.0109 Retrieved June 18, 2018.
  • Lopes, F.L.; et.al. Finding Rare, Disease-Associated Variants in Isolated Groups: Potential Advantages of Mennonite Populations. Human Biology 88(2):109-120. 2016.
  • Ruder, K. K. Genomics in Amish Country; Genome News Network. www.genomenewsnetwork.org/articles/2004/07/23/sids.php Retrieved June 19, 2018.
  • Young Center for Anabaptist & Pietist Studies, Elizabethtown College. http://groups.etown.edu/amishstudies/ Retrieved June 19, 2018.

Questions & Answers

  • Where can I learn more about the Amish?

    Please come to Ohio and visit the large Amish community in Holmes County in Ohio north of Columbus and southeast of Manfield. Some of the things you will enjoy here are included at www.visitamishcountry.com/. Plain City on the western border of Columbus also supports an Amish community, and to the east, Roscoe Village history center is located at 600 N. Whitewoman Street Coshocton, Ohio 43812. Overall, Millersburg and Berlin to the east in Holmes County are my favorites, with authentic cuisine in local restaurants, a huge cheese shop with cafes inside and tons of free samples of many food items. While you look around in local bookshops, you can see horses and buggies outside the windows as they share the road with cars. Many antique stores and such thrive here as well. It is another world.

Comments

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    • wheelinallover profile image

      Dennis Thorgesen 

      3 months ago from Beatrice, Nebraska U.S.

      This is a fantastic article. Although the Amish don't use computers, they often have friends that do. Although I heard some of the children are born with birth defects I never saw any. The time I spent in Amish country was in Pennsylvania. The house I lived in was one converted from an Amish home, and my next door neighbor was an Amish farmer. Although I was part of a progressive Mennonite fellowship we often had Amish people who visited, generally for weddings, or other special events.

    • Anita Hasch profile image

      Anita Hasch 

      19 months ago from Port Elizabeth

      Very interesting hub. Seems a pity that the children are not allowed to study further.

    • ImKarn23 profile image

      Karen Silverman 

      5 years ago

      i like that - when people reach across fences!

      hugs Pattyxx

    • Patty Inglish, MS profile imageAUTHOR

      Patty Inglish MS 

      5 years ago from USA. Member of Asgardia, the first space nation, since October 2016

      Thank you, thank you, ImKarn23. Your opinion means much to me. I began trying to learn more about the Amish when a friend in high school became best friends with an Amish neighbor young woman, rather than nay of the girls at school. They are still friends today!

    • ImKarn23 profile image

      Karen Silverman 

      5 years ago

      it makes perfect sense that the amish have a lower cancer rate- they grow their own food and don't use chemicals or enhance them! I have to tell you that i am absolutely FLOORED by your hub - the depth and knowledge of the information presented is incredible - i have learned more here than i have in like - 3 whole days! Thank you for that..

      I've not heard of these afflictions, but i can certainly see where the problems come in!

      voting and sharing on - for SURE!

    • Patty Inglish, MS profile imageAUTHOR

      Patty Inglish MS 

      5 years ago from USA. Member of Asgardia, the first space nation, since October 2016

      DDE and MsDora - We have a large Amish community in the western third of our county, including fantastic restaurants, delicastessans packed with Amish foods, and a lot more. The Amish are very cordial here, but don't stand around and talk to us - always working, while the Mennonites are very friendly. The friendly Amish I met owned a restaurant and just recently retired. I miss them a lot.

    • MsDora profile image

      Dora Weithers 

      5 years ago from The Caribbean

      Thanks for these facts on the Amish. My friends and I visited their community in Shipshewana, Indian and enjoyed the day immensely. We shopped, dined and browsed through their art and crafts. I love and admire them and appreciate your effort to dispel falsehood about them. Voted Up and Useful.

    • DDE profile image

      Devika Primić 

      5 years ago from Dubrovnik, Croatia

      Truly amazing facts about the Amish and I knew some of what you mentioned but then again it was false now I have learned even more of the what is true and of what is false.

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