Click the below link for a very indepth discussion of 'fumarase' and it's discovery among the FLDS, treatment, statistics, etc.
Posted on 04/27/2008 8:40:54 AM PDT by MizSterious
Meanwhile, many of the children in the FLDS group suffer from fumarase deficiency, a genetic disease that causes acute retardation and physical deformation. The disease was spread through decades of inbreeding, according to John Dougherty, an investigative reporter who has written extensively about the polygamist sect.
Link includes audio report with more details.
This makes it doubly sad. I wonder if the state can add kidnapping charges to everything else.
Click the below link for a very indepth discussion of 'fumarase' and it's discovery among the FLDS, treatment, statistics, etc.
You, my dear, have put it into much more respectable verbage than I could have.
~</;o)
It’s a story that’s been around, but which none of MSM wanted to touch (not even with a 10-ft pole). Check some of the links on this thread—there is ample information about this problem available.
Article on Endogamy
http://en.wikipedia.org/wiki/Endogamy
Endogamy is the practice of marrying within a social group. Cultures who practice endogamy require marriage between specified social groups, classes, or ethnicities. A Danish endogamist would require marriage only to other Danes. Just about any accepted social grouping may provide a boundary for endogamy. Despite the fact that many people tend to marry members of their own social group, there are some groups that practice endogamy very strictly as an inherent part of their moral values, traditions or religious beliefs.
and Fumarase Deficiency
http://en.wikipedia.org/wiki/Fumarase_deficiency
" The Texas Department of Family and Protective Services The leadership at the YFZ Ranch have demonstrated, in a most blatant way, their inability to properly care for, or even account for their children. Many have been left in critical medical conditions, resulting in permanent mental damage, and others are silenced through intimidation, and threats of damnation in hell, by their parents.
Rare gene disorder common in FLDS
Genetic disorder: About 20 cases have been discovered in 15 years
in two polygamous towns
By Brooke Adams
The Salt Lake Tribune
For more than 15 years, an Arizona physician has quietly cataloged a growing number of cases of a rare genetic disorder in a polygamous community on the Utah-Arizona border that causes severe mental retardation.
Called fumarase deficiency, the disorder occurs so infrequently that fewer than 50 cases have been documented worldwide. Yet pediatric neurologist Theodore Tarby counts somewhere between a dozen and 20 children suffering from the metabolic disease in the twin towns of Hildale, Utah, and Colorado City, Ariz.
"I would say we have about half of the world's population [of the disorder]," Tarby said in a telephone interview from Phoenix.
Genetic diseases are not uncommon in closed societies, experts say, pointing to rare disorders that are found among the Amish, Mennonites and Bedouins.
The twin towns are home to some 8,000 members of the Fundamentalist Church of Jesus Christ of Latter Day Saints, a polygamist sect that has called the Arizona Strip home since 1935.
Most residents trace their family lines back to four original founders - John Y. Barlow, Leroy Johnson and Richard and Fred Jessop - and intermarriages can contribute to the genetic risk.
"The whole town is related to each other one way or another through marriage," said Ben Bistline, an ex-FLDS member and author of The Polygamists: A History of Colorado City, Arizona.
Tarby said he first saw a child with the problem about 15 years ago, when an FLDS couple came to a Phoenix clinic with a son suffering from a degenerative condition. He took a urine sample, sent it to a lab in Colorado for analysis and received the startling diagnosis.
Tarby later determined that another child in the family had the same problem - though her parents had thought it was cerebral palsy. Since then, the number of children in the community with fumarase deficiency has grown.
In the disorder, an enzyme necessary to generate energy from food is missing. As a result, cells - particularly brain cells - don't get enough fuel to grow, multiply and function properly. The disorder causes varying degrees of disability, including severe mental retardation, muscle control problems and debilitating epileptic seizures.
Some of the children Tarby has seen look completely normal as infants; others have facial deformities.
"Usually the kids can appear completely normal at birth but then they show delays in development as they grow older," said Nicola Longo, a professor of pediatrics at the University of Utah.
Some children with the severest form of the disorder do not live long. Like many genetic disorders, fumarase deficiency makes children with it more susceptible to common childhood infections, he said.
"Infections that wouldn't normally kill children can be deadly for these children," said Longo, who also is director of metabolic services in the Department of Pediatrics.
Tarby said that in the years he has treated children with the disorder, just one has died. The oldest is now 20 years old.
Longo said the disease can't be detected by existing newborn screenings, though amniocentesis would pick up problems in a developing fetus. That is an option the FLDS are unlikely to pursue.
There is no screening test that might identify gene carriers, either, though researchers could isolate the particular genetic changes found in a patient and then look for the same DNA markers in blood relatives to find carriers,
There may be other identifying clues, however. Longo said the most current research on the disorder has found that people with the recessive gene are prone to certain benign skin tumors and, in women, benign fibrous uterine tumors.
"Carrying the gene is nothing unusual," Longo said. "We all carry at least 20 bad genes. The problem is when you have children with someone carrying the same bad gene."
Even then, odds of giving birth to a child with the disorder is a genetic crapshoot - not, these experts say, due strictly to intermarriage.
"That's a bad concept," said D. Holmes Morton, a physician who has spent more than 20 years working with Old Order Amish in Strasburg, Penn.
Morton's work in the community has led to identification of two genetic disorders: an inherited form of sudden infant death syndrome and a rare form of microcephaly.
He also was instrumental in discovery of a genetic disorder among Mennonites known as maple syrup urine disease, a metabolic disorder.
Morton attributes 10 percent of the genetic disorders seen in the Amish to intermarriages and 90 percent to random genetic drift.
He said small, rapidly expanding populations like these - and the FLDS - cause bad genes to become amplified. Predicting how many children are likely to be affected is a matter of simple math - and chance.
When two carriers of the recessive gene marry, there is a one in four chance of their children having a genetic mutation.
"The problem is when you toss the coin, you never know which way it will come out," Longo said. "It is just a matter of chances."
Some communities, such as the Orthodox Ashkenazi Jews, test for the gene that causes Tay-Sachs disease and share those findings with matchmakers, who then avoid pairing carriers.
"If they arrange marriages, there is an opportunity there," Morton said.
But Tarby has little reason to believe science will influence mating habits of the FLDS, where church leaders decide who marries whom.
Tarby met with about 150 members of the FLDS community in November to explain the disorder and how it could be prevented.
He quickly dispelled a rumor that it was being caused by something in the town's water, saying it was simply procreation. Otherwise, he said, the audience had intelligent, concerned questions.
He told them things that would "stop production of these kids," such as prenatal testing, but that is "only worthwhile if you are going to interrupt pregnancies" and genetic testing would only work if "they would change their mating habits."
"They consider these children to be their responsibility from God and their duty is to produce as many children as possible," he said. "There isn't any reason in their view to slow down the having of children."
http://209.85.173.104/search?q=cache:qoLCr-5J6woJ:t4.jordan.k12.ut.us/teacher_resources/Science/modelclassroomroot/Activities/Biology%2520Activities/Standard%25204/Obj.%25201/RargeneinFLDS.doc+Rare+gene+disorder+common+in+FLDS&hl=en&ct=clnk&cd=1&gl=us
Salt Lake Tribune, cached at Google
THIS ought to solve the problem for you that are SO disturbed by the source of the genetic disease article.
Is this Willie the same “Big Willie” who was Warren Jeffs bodyguard/enforcer?
Did you miss the part[s] where I said “I’ll buy the rope?”. In fact, I said it twice for the memory impaired. Maybe some need to read it three times. Let me know.
It give the most plausible explanation on why these children needed to be removed.
What does buying the rope have to do with my comment? I was addressing your blanket-accusation of being a “Mormon-Hater.” I’m not, and I’m not going to let you get away with making that accusation. I’ll correct you every time you do it. I frankly don’t care if you buy rope, make rope, or smoke it.
Thanks for the info, deport.
“Rare gene disorder common in FLDS”
“Genetic disorder: ABOUT 20 cases have been discovered in 15 years in two polygamous towns”
If you are trying to pass this off as a Scientific document please note that scientists do not use the word “about”.
What is it in the general population?
“Toward that goal, CPS must offer an array of self-improvement opportunities to parents, including drug and alcohol treatment, job training, parenting classes and counseling.”
The parents (or children) won't even give their last names. They aren't doing themselves any favors toward getting their children returned.
The fact a lot of the new children (or ones buried in their cemeteries) have this disorder is even more damning.
Your squealing was about the source...post 28 used a source that should fit your agenda very well, Salt Lake Tribune, cached at Google.
Your hyperbole and straw men don't change the facts, much as you would like them too.
You’re just lonely.
Especially noticeable because you started repeating yourself.
I am sure with all your lofty concerns over diving into a thread where rational, logical discussions, and some mild banter is going on, that we will all now kneel at your knees and worship the ground you walk on.
The WHATIFS are merely human attempts to discuss their concerns, based on recently learned information. If they don’t mention their individual tack on a subject, how can anyone else address it with course corrections?
This is a public discussion forum, and this case is a very ‘sensitive’ one, and includes a sublist of just about EVERY HOT SUBJECT discussed on F.R, including the kitchen sink and Global Warming.
If people want to discuss it, and do their best to remain civil, and follow The website owner’s rules,
WHAT BUSINESS IS THAT OF YOUR’S?
Your argument that a thread about the safety of women and children should not be dominated by female freepers, is just silly. So is the idea that everyone must not discuss or debate the subject, until it’s all over.
Frankly, posters who come in and insult the LADIES around here, disgust me.
Complete lack of respect.
Here's an even better idea, genius. WE don't convicty anyone. In our country, a jury does that chore. The rest of us are allowed to not only have opinions, but to express them. Fancy that.
Bravo! I’ve been saying this for a number of days. There is a whole segment of society that will say or agree to anything that anti-Mormon...because of their vision of the religion.
I agree and have said before, we need to wait for all the info.
Having said that, I’m surprised and than a little bit delighted we are privy to what info has come out so far. Usually, in cases where children (minors) are involved, little info is made for public consumption.
As far as the *rope* , the sect itself is providing plenty.
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