Girl’s Disease Turning Skin to Stone

Friday, August 01, 2008
Fox News

11 year old girl suffers from rare health condition that causes one’s skin to turn to stone…….
[This is a rare disease I have never heard of but certainly can image how hard it must be on her parents to watch and the digression of their daughter’s condition…. ]   

Young girl’s skin is turning to stone as she suffers from a rare, incurable disease called acute systemic scleroderma, Scotland’s Daily Record reported Thursday.

The autoimmune disorder means Hope Barrie’s body produces too much collagen, causing her skin to tighten and harden.

It is difficult for the 11-year-old from Tarbolton, Ayrshire, Scotland, to move around, and she has already had to give up one passion.

“I loved playing the violin and it would be amazing to start playing again,” Hope said.

Hope suffers from the systemic version of the disease, which starts out with poor circulation in the fingers and progresses to thickening of the skin, according to the International Scleroderma Network’s Web site. The disease may even spread to her organs.

As the disease progresses, the hardening of the skin makes it difficult to move fingers and toes, and open the mouth. It also can form scar tissue around the internal organs.

In America, the disease affects about 300,000 individuals [ which in my opinion is too many not be aware of ] many of whom are females between the ages of 30- to 50-years-old at the disease’s onset, according to the International Scleroderma Network.

Hope’s family told the newspaper they’re hoping that pioneering stem cell treatments being done in the U.S. may also help Hope, who is currently undergoing chemotherapy to fight the disease.

Although there is no cure for scleroderma, researchers at Virginia Mason Research Center and Duke University Medical Center are working with a stem cell procedure that has been shown to reverse the symptoms of the disease.

Emily Woods, of Plano, Texas, had the experimental procedure in 2006, according to a New York Times article. Within six months, the 87-pound mother — who had been close to death — was back on her feet and enjoying her daughter, the article said.

The transplant process involves doctors removing the stem cells from a patient’s own blood cells and returning them to the body, where it is hoped they will regenerate.

Click here to read the full story from the Daily Record

[ I know I came across “Gastroparesis” when a good friend of mine called and told me she had been diagnosed with this condition and I was just recently diagnosed with a condition called “hyperparathyroidism”.  It just makes you wonder how many diseases there are that we don’t know about.  I’m thinking of starting a blog on rare conditions that need public awareness.  If anyone would like to help me work on this project just let me know……flagranny2 ]

Airlines Thwart Plans of ‘Too Sick’ Girl, 5, to Travel to China for Stem Cell Treatment

Monday, June 30, 2008
FoxNews

As a parent what would you do?….flagranny

Two airlines this weekend declined to fly Miranda Goranflo and her daughter Hailey to Beijing, where the 5-year-old was to receive stem-cell treatments for a rare fatal disease, the Courier-Journal reported.

The airlines, Air China and Air Canada, decided during a layover in Vancouver, British Columbia, that Hailey was “too sick” to fly this weekend. After being treated at a Vancouver hospital for seizures, the girl and her mother were forced to fly home to Shepherdsville, Ky., the report said.

“I’m completely distraught,” Goranflo, who disagreed that her daughter was unfit to fly, told the Courier-Journal from Vancouver. “I cannot believe we’ve come this far and we have to come home.”

Click here for photos of Hailey.

Hailey and her 3-year-old brother Carter suffer from an incurable disorder called Late Infantile Batten Disease. The disease causes seizures, dementia, and blindness. Most sufferers don’t make it beyond the age of 12. Hailey can no longer walk, talk or eat without a feeding tube, the report said.

Batten disease is relatively rare and occurs in an estimated 2 to 4 of every 100,000 live births in the United States, according to the National Institute of Neurological Disorders and Stroke.

After raising $78,000, Hailey’s parents planned to take her to China for an experimental stem-cell treatment that is not offered in the U.S.

Details of Hailey’s thwarted trip were posted on the family’s blog Saturday.

Click here for more on this story from the Courier-Journal.

DA: Wisconsin Parents Who Prayed as Daughter Died to Face Murder Charges

Monday, April 28, 2008

Madeline — called Kara by her parents — died Easter Sunday at the family’s rural Weston home. An autopsy determined she died from undiagnosed diabetic ketoacidosis, an ailment that left her with too little insulin in her body.

WESTON, Wis. —  Parents who prayed as their 11-year-old daughter died of untreated diabetes will be charged with second-degree reckless homicide, the Marathon County district attorney said Monday.

“It is very surprising, shocking that she wasn’t allowed medical intervention,” District Attorney Jill Falstad said.

She announced the charges Monday during a news conference at the Everest Metro Police Department with Police Chief Dan Vergin. Vergin has said Dale and Leilani Neumann told investigators their daughter Madeline last saw a doctor when she was 3 to get some shots.

The couple face up to 25 years in prison if convicted.

The couple and their lawyer did not immediately return messages left by The Associated Press.

Falstad said the Neumanns have cooperated with investigators and are not under arrest. They have agreed to make an initial court appearance Wednesday, she said.

For the complete story click [ Here ]

Ex-Chief of China Food and Drug Unit Sentenced to Death for Graft

DAVID BARBOZA
Published: May 30, 2007

This article follows my two previous posts-
-“Tainted Chinese Imports Common”
-“From China to Panama, a Trail of Poisoned Medicine”

SHANGHAI, May 29 — The former director of China’s top food and drug safety agency was sentenced to death on Tuesday after pleading guilty to corruption and accepting bribes, the state-controlled news media reported.

Zheng Xiaoyu was the commissioner of the Food and Drug Administration from its founding in 1998 until mid-2005, when he was removed from his post. He was detained in February in a government investigation of the agency, which is supposed to be China’s food and drug watchdog. Two other top agency officials have also been detained.

Mr. Zheng, 62, received the unusually harsh sentence amid heightened concern about the quality and safety of China’s food and drug system after several scandals involving tainted food and phony drugs.

China is also under mounting pressure to overhaul its food export controls after two Chinese companies were accused this year of shipping contaminated pet food ingredients to the United States, setting off one of the largest pet food recalls in United States history.

China’s regulators are also coming under scrutiny after diethylene glycol, a toxic chemical sometimes used in antifreeze, ended up in cough syrup and toothpaste in Latin America. In Panama, more than 100 people died last year after consuming cough medicine laced with diethylene glycol, which was shipped from China mislabeled as a harmless syrup.

The incidents pose a huge threat to China’s growing food and drug exports and have already led to international calls for new testing and screening methods for Chinese-made goods.

The problems are more serious in China because tens of thousands of people are sickened or killed every year as a result of rampant counterfeiting of drugs, and tainted and substandard food and drugs.

For instance, last year 11 people died in China after being treated with an injection tainted by a poisonous chemical. Six people died and 80 others fell ill after taking an antibiotic that had been produced, according to government regulators, with a “substandard disinfectant.”

Small drug makers in China have long been accused of manufacturing phony or substandard drugs and marketing them to the nation’s hospitals and pharmaceutical companies. And mass poisonings involving tainted food products are common.

The Chinese government has stepped up its patrols in recent weeks, announcing measures aimed at strengthening food and drug safety and cracking down on counterfeiting operations.

On Tuesday, the government said it was preparing to release its first regulation on nationwide food recalls. It also said it would crack down on food products that are being illegally exported, bypassing food inspections.

As for Mr. Zheng, the government said that as director of the Food and Drug Administration, he took bribes worth about $850,000 in exchange for approving drug production licenses.

Worried that many of those drugs may be substandard, China is reviewing more than 170,000 production licenses the agency issued in the past decade.

It is unclear whether or when Mr. Zheng will be executed. In some cases, death sentences for officials are commuted.

From China to Panama, a Trail of Poisoned Medicine

 

In Chine At least 18 people, most of them in Guangdong Province, died in a month last year after they ingested contaminated medicine.  

(The following are excerpts taken from a 7 page article detailing  the research as it follows the Toxic pipeline of tracking counterfeit drugs .)

By WALT BOGDANICH and JAKE HOOKER
Published: May 6, 2007 

The syrupy poison, diethylene glycol, is an indispensable part of the modern world, an industrial solvent and prime ingredient in some antifreeze.

It is also a killer. And the deaths, if not intentional, are often no accident.

 Over the years, the poison has been loaded into all varieties of medicine — cough syrup, fever medication, injectable drugs — a result of counterfeiters who profit by substituting the sweet-tasting solvent for a safe, more expensive syrup, usually glycerin, commonly used in drugs, food, toothpaste and other products.

Panama is the most recent victim. Last year, government officials there unwittingly mixed diethylene glycol into 260,000 bottles of cold medicine — with devastating results. Families have reported 365 deaths from the poison, 100 of which have been confirmed so far. With the onset of the rainy season, investigators are racing to exhume as many potential victims as possible before bodies decompose even more.

Panama’s death toll leads directly to Chinese companies that made and exported the poison as 99.5 percent pure glycerin…………..

Last week, the United States Food and Drug Administration warned drug makers and suppliers in the United States “to be especially vigilant” in watching for diethylene glycol. The warning did not specifically mention China, and it said there was “no reason to believe” that glycerin in this country was tainted. Even so, the agency asked that all glycerin shipments be tested for diethylene glycol, and said it was “exploring how supplies of glycerin become contaminated.”

China is already being accused by United States authorities of exporting wheat gluten containing an industrial chemical, melamine, that ended up in pet food and livestock feed. The F.D.A. recently banned imports of Chinese-made wheat gluten after it was linked to pet deaths in the United States.

From page 2 –

In fact, The Times found records showing that the same Chinese company implicated in the Haiti poisoning also shipped about 50 tons of counterfeit glycerin to the United States in 1995. Some of it was later resold to another American customer, Avatar Corporation, before the deception was discovered.

“Thank God we caught it when we did,” said Phil Ternes, chief operating officer of Avatar, a Chicago-area supplier of bulk pharmaceuticals and nonmedicinal products. The F.D.A. said it was unaware of the shipment.

 From page 3-

The failure of the government to stop poison from contaminating the drug supply caused one of the bigger domestic scandals of the year. Last May, China’s premier, Wen Jiabao, ordered an investigation of the deaths, declaring, “The pharmaceutical market is in disorder.”

At about the same time, 9,000 miles away in Panama, the long rainy season had begun. Anticipating colds and coughs, the government health program began manufacturing cough and antihistamine syrup. The cough medicine was sugarless so that even diabetics could use it.

The medicine was mixed with a pale yellow, almost translucent syrup that had arrived in 46 barrels from Barcelona on the container ship Tobias Maersk. Shipping records showed the contents to be 99.5 percent pure glycerin.

It would be months and many deaths later before that certification was discovered to be pure fiction.

From page 4 – A Major Clue

One patient of particular interest to Dr. Sosa came into the hospital with a heart attack, but no Guillain-Barré-type symptoms. While undergoing treatment, the patient received several drugs, including Lisinopril. After a while, he began to exhibit the same neurological distress that was the hallmark of the mystery illness.

“This patient is a major clue,” Dr. Sosa recalled saying. “This is not something environmental, this is not a folk medicine that’s been taken by the patients at home. This patient developed the disease in the hospital, in front of us.”

Soon after, another patient told Dr. Sosa that he, too, developed symptoms after taking Lisinopril, but because the medicine made him cough, he also took cough syrup — the same syrup, it turned out, that had been given to the heart patient.

“I said this has got to be it,” Dr. Sosa recalled. “We need to investigate this cough syrup.”

From page 5-

The Taixing Glycerine Factory bought its diethylene glycol from the same manufacturer as Mr. Wang, the former tailor, the government investigator said. From this spot in China’s chemical country, the 46 barrels of toxic syrup began their journey, passing from company to company, port to port and country to country, apparently without anyone testing their contents.

Traders should be thoroughly familiar with their suppliers, United States health officials say. “One simply does not assume that what is labeled is indeed what it is,” said Dr. Murray Lumpkin, deputy commissioner for international and special programs for the Food and Drug Administration.

From page 6-

A lawyer for Medicom, Valentín Jaén, said his client was a victim, too. “They were tricked by somebody,” Mr. Jaén said. “They operated in good faith.”

In Panama, the barrels sat unused for more than two years, and officials said Medicom improperly changed the expiration date on the syrup.

During that time, the company never tested the product. And the Panamanian government, which bought the 46 barrels and used them to make cold medicine, also failed to detect the poison, officials said.

The toxic pipeline ultimately emptied into the bloodstream of people like Ernesto Osorio, a former high school teacher in Panama City. He spent two months in the hospital after ingesting poison cough syrup last September.

From page 7-

Last fall, at the request of the United States — Panama has no diplomatic relations with China — the State Food and Drug Administration of China investigated the Taixing Glycerine Factory and Fortune Way.

The agency tested one batch of glycerin from the factory, and found no glycerin, only diethylene glycol and two other substances, a drug official said.

Information source: The New York Times
Renwick McLean and Brent McDonald contributed reporting