Family Lives With Pain of Little-Known Disorder

11-year-old Tyler Staab has a somewhat unknown disorder that causes uncontrollable muscle spasms. It's called dystonia.

Scientists are working on finding its cause and a cure.

The Staab family is leading this effort.

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Mother Flees With Son to Elude Treatment Order

Police across the United States were on the look-out today for a mother and son who had fled their home in southern Minnesota to elude court-ordered chemotherapy for the boy, who has been diagnosed with Hodgkin's lymphoma. (The Independent)

An arrest warrant for Colleen Hauser was issued late Tuesday after she failed to appear for a court hearing on the condition of her 13-year-old son Daniel. Her husband told the judge that she had disappeared from their home with Daniel the previous evening and that he did not know where they were.

On Monday, Mrs Hauser had taken her son to their family doctor who said that a court-ordered X-ray had shown that his tumour was growing and needed urgent treatment. While Hodgkin's lymphoma is a serious condition, it is often effectively tackled with aggressive chemotherapy.

The Hauser family, of Sleepy Eye, Minnesota, has been declining the treatment for the young man for religious reasons. They subscribe to the teachings of the Nemenhah Band, a religious group that believes in natural alternatives to modern medicine.

"I know many people around here who have had cancer, they did chemo, it would come back," Anthony Hauser, the boy's father, told the Star Tribune newspaper of Minneapolis. "They did the chemo again and again and they are all in the grave. Chemo isn't foolproof."

He acknowledged that he was disappointed by his wife's actions saying that they had agreed to appear in court together on Tuesday. "She said she was going to leave," he told the court after showing up on his own. "She said, ''that's all you need to know.' And that's all I know."

In testimony unsealed this week, the young boy, who has learning disabilities, said if anyone tried to make him undergo chemotherapy, "I'd fight it. I'd punch them and I'd kick them".

The failure of the mother and son to show up on Tuesday surprised local officials. "It's absolutely crazy. It's very disappointing," commented James Olson, a lawyer for the local family services agency. "We're trying to do what's right for this young man."

In Missouri, the founder of the Nemenhah group, Philip Cloudpiler Landis, was critical of Mrs Hauser's actions. "She should have gone to court," he told the Associated Press yesterday. "It's how we work these things out. You don't solve anything by disregarding the order of the judge."

(AP) A Minnesota judge has ruled that a 13-year-old boy with a highly treatable form of cancer must seek conventional medical treatment despite his parents' objections on religious grounds.

In a 58-page ruling Friday, Brown County District Judge John Rodenberg found that Daniel Hauser has been "medically neglected" and is in need of child protection services.

Rodenberg said Daniel will stay in the custody of his parents, but Colleen and Anthony Hauser have until May 19 to get an updated chest X-ray for their son and select an oncologist

The judge wrote that Daniel has only a "rudimentary understanding at best of the risks and benefits of chemotherapy. ... he does not believe he is ill currently. The fact is that he is very ill currently."

Daniel's court-appointed attorney, Philip Elbert, called the decision unfortunate.

"I feel it's a blow to families," he said. "It marginalizes the decisions that parents face every day in regard to their children's medical care. It really affirms the role that big government is better at making our decisions for us."

Elbert said he had not spoken to his client yet. The phone line at the Hauser home in Sleepy Eye in southwestern Minnesota had a busy signal Friday. The parents' attorney had no immediate comment but planned to issue a statement.

Daniel was diagnosed with Hodgkin's lymphoma and stopped chemotherapy in February after a single treatment. He and his parents opted instead for "alternative medicines" based on their religious beliefs.

Child protection workers accused Daniel's parents of medical neglect; but in court, his mother insisted the boy wouldn't submit to chemotherapy for religious reasons and she said she wouldn't comply if the court orders it.

Doctors have said Daniel's cancer had up to a 90 percent chance of being cured with chemotherapy and radiation. Without those treatments, doctors said his chances of survival are 5 percent.

Daniel's parents have been supporting what they say is their son's decision to treat the disease with nutritional supplements and other alternative treatments favored by the Nemenhah Band.

The Missouri-based religious group believes in natural healing methods advocated by some American Indians.

After the first chemotherapy treatment, the family said they wanted a second opinion, said Dr. Bruce Bostrom, a pediatric oncologist who recommended Daniel undergo chemotherapy and radiation.

They later informed him that Daniel would not undergo any more chemotherapy. Bostrom said Daniel's tumor shrunk after the first chemotherapy session, but X-rays show it has grown since he stopped the chemotherapy.

"My son is not in any medical danger at this point," Colleen Hauser testified at a court hearing last week. She also testified that Daniel is a medicine man and elder in the Nemenhah Band.

The family's attorney, Calvin Johnson, said Daniel made the decision himself to refuse chemotherapy, but Brown County Attorney James Olson said the teenager did not have an understanding of what it meant to be a medicine man or an elder.

Court filings also indicated Daniel has a learning disability and can't read.

The Hausers have eight children. Colleen Hauser told the New Ulm Journal newspaper that the family's Catholicism and adherence to the Nemenhah Band are not in conflict, and that she has used natural remedies to treat illness.

Nemenhah was founded in the 1990s by Philip Cloudpiler Landis, who said Thursday he once served four months in prison in Idaho for fraud related to advocating natural remedies.

Landis said he founded the faith after facing his diagnosis of a cancer similar to Daniel Hauser's illness. He said he treated it with diet choices, visits to a sweat lodge and other natural remedies.

"My son is not in any medical danger at this point. "- Colleen Hauser

Cat Parasite Affects Everything We Feel and Do

ABCNews:
"The parasite, Toxoplasma gondii, has been transmitted indirectly from cats to roughly half the people on the planet, and it has been shown to affect human personalities in different ways...

Research has shown that women who are infected with the parasite tend to be warm, outgoing and attentive to others, while infected men tend to be less intelligent and probably a bit boring. But both men and women who are infected are more prone to feeling guilty and insecure." (ARTICLE)

U.S. Face Transplant Recipient Offers Thanks

(CNN) -- In 2004, a bullet ripped away Connie Culp's nose, cheeks and upper jaw. Metal fragments sprayed into her skull and stripped her face away, leaving nothing except for her eyes, her chin and forehead.

Without her nose, she could not smell. She breathed through a tracheostomy -- a surgical opening in her neck. Without lips, she could barely speak.

But Tuesday, when Culp, 46, the first recipient of a face transplant in the United States, stepped in front of the cameras at a news conference, she was whole.

In a soft voice, the Ohio mother of two repeatedly thanked the medical staff and the deceased donor whose nose, upper lip, cheekbones are now hers.

"I want to focus on the donor family that allowed me to have this Christmas present," she told reporters gathered at the Cleveland Clinic, where her surgery took place.

In December, Culp underwent a 22-hour transplant surgery. Although the hospital announced the facial transplant at that time, the patient had remained anonymous until the news conference.

During the surgery, tissue from a deceased donor's face was shaped and fitted into position. Multiple layers of tissue, bone, muscle and blood vessels, nerve grafts and each artery and vein were connected. Culp received a nose, lower eyelids and upper lips, as doctors filled in the missing components of her face.

Culp could not yet move her facial muscles to form a smile, but she laughed.

"Well, I got me my nose." she quipped.

Two months after the surgery, Culp was discharged from the hospital and returned home. Before the surgery, Culp could not eat solid foods. She could not taste.

"Connie can now enjoy her food," said Dr. Maria Siemionow, who led the transplant operation. "She eats hamburgers and enjoys her pizzas, she's drinking coffee from the cup."

Her new face allows her to "blend with society."

"As you can see we have now a healthy person and happy person," Siemionow said. "She has reduced dramatically her pain and also she's able to walk on the street without being called names."

Since the operation, doctors say Culp's new face has developed more movement. The new facial nerves are growing slowly, about an inch a month.

"While Connie can do several things now that she was unable to do in the past, as time goes on more and more of the facial nerves will grow," said Dr. Frank Papay, chairman of the Dermatology and Plastic Surgery Institute at the Cleveland Clinic. "She will become more animated."

For years, Culp lived "in tremendous pain, chronic pain, over the entire time," said Siemionow, director of plastic face transplant surgery research and head of microsurgery training at the hospital.

Culp told a local television station in a 2008 interview that she had been shot in the face from just eight feet away in an attempted murder-suicide by her husband.

In 2005, Culp came to the Cleveland Clinic for treatment. After 30 surgical procedures, none had restored her basic functions.

"The last resort and the last option was to consider face transplantation," said Siemionow. Transplant recipients have to take immunosuppressing, anti-rejection drugs for the rest of their life.

After the hospital's surgeons, ethical committee members, psychiatry and psychology specialists met with Culp, they decided "that Connie is the right patient," Siemionow said.

Doctors involved in Culp's treatment said the surgery was not about aesthetics, but to restore Culp's basic abilities.

"We are actually overwhelmed by how great she's doing functionally," Siemionow said. "And I'm re-emphasizing that this is all about functional outcome. Someone who couldn't breathe through the nose, who couldn't eat solid foods, didn't have a palate or not able to drink from a cup. ... So if she can do all these functions that are taken for granted on a daily basis, this is amazing."

Although there is a risk Culp's body could still reject the transplant, the doctors said they have not seen such signs.

Some critics say face transplants are unnecessary, because they are risky procedures involving a lifetime of immunosuppressants, that do not save a person's life, but improve an individual's appearance. Previous face transplants performed in Europe and Asia generated controversy. A Chinese man whose face was disfigured in a bear attack died of unknown causes two years after receiving the face transplant.

The fact that Culp regained some of her basic functions highlights that "this is not cosmetic surgery in any sense of the word," said Dr. Eric Kodish, the professor and chairman of the Cleveland Clinic's Department of Bioethics. "We remain convinced about the ethical justification for the face transplant in this and potentially in other cases in the future."

Ultimately, the face transplant affords an individual's "right to decide what kind of life they want to live." Many with facial disfigurements are called names, can't go out in public or wear masks to hide their face, said Siemionow.

In Culp's case, it was a matter of restoring basic physical abilities.

"If you can breathe through your nose in the spring in Cleveland, isn't that amazing?" said Siemionow.

Culp will require a few more cosmetic procedures, for example to remove excess skin from her face.

Culp read a statement and did not take questions. She told reporters in the news conference that she had been shot and said, "I don't want to go into it."

Then she asked the public to have empathy for people with facial disfigurements.

"When somebody don't look as pretty as you do, don't judge them," she said. "You don't know what might happen to you. Don't judge the people who don't look the same way as you do. You never know when it may be taken away from you."

'Teenager Suffering From Rare Disease Which Will Turn Her Into Lliving Statue'

So sad..
A teenager is suffering from a rare disease which will turn her into "living statue" as her muscles turn to bone.

Already her arms have locked in a bent position at her waist and which means she can no longer reach up or dress without help.

Seanie Nammock, 13, from London, suffers from fibrodysplasia ossificans progressiva (FOP), thought to affect only 600 people across the world.

Even a slight knock can cause a reaction which triggers irreversible bone growth which lock her joints into place.

The teenager discovered she had the condition last year, when a minor accident on a trampoline caused her first flare-up.

Her mother, Marian Granaghan, said: "She had fallen on her back and it had caused a sore lump to form.

"It was huge, hard red and hot to the touch so I took her to the hospital to get it checked out."

But doctors could not diagnose the condition immediately.

"The drip she was on before she was diagnosed is probably what caused her left arm to lock," said Marian.

"To be told your daughter has one of the worst medical problems on the planet and that there is no cure is every mother's nightmare," she added.

Her daughter is determined stay positive about her condition.

She said: "I just said 'Oh well I'll have to just get on with it'.

"I'm still me so I'm trying to not let it make a any difference."

She added: " I don't get scared by looking at stuff on the internet as I don't automatically assume that something bad is going to happen to me. It might not, I like to stay positive."

People with the condition are often born with big toes shorter than the rest, which can be an aid to early diagnosis.

Tests are underway in America on a possible drug to halt the bone growth associated with FOP after doctors discovered the gene that causes the disease.

Breastfeeding Man

"After researching the idea on the internet, Georgia, 27, expresses her breastmilk as often as she can for her father to drink.

He has the milk on his bowl of cornflakes every morning. It’s been his daily routine for the past six months and Tim believes the milk has given him a boost."

[article here]

"Oh That's Nassssty, Quagmirrrreeee..."

"However, Mr Manit and his colleagues at the IUN were extremely surprised when a 31-year old British born man presented at their clinic for treatment recently for gross abnormality of the penis and ulceration as a result of injecting oils under his skin.

"This was the first case we had seen. It was a very interesting case. "
"The man had used a high-pressure pneumatic grease gun to inject his penis. "
"But the girth of the man's penis continued to grow and he was no longer able to achieve an erection. "
"He needed urgent treatment for both problems."

The man was treated by careful removal of dead tissue under the skin of the penis by surgery.

(He was also offered psychological counselling. )

[contnd. from this article]

Doctors Remove Tree Growing in Lung

A fir tree has been found growing inside a man's lung by surgeons who were operating on him for suspected cancer.

The tree, measuring 5cm, was discovered by Russian doctors when they opened up Artyom Sidorkin, 28, to remove what they thought was a tumour.

Medical staff believe that Mr Sidorkin somehow inhaled a seed, which later sprouted into a small fir tree inside his lung.

The patient had complained of extreme pain in his chest and had been coughing up blood. Doctors were convinced he had cancer.

'We were 100 per cent sure,' said surgeon Vladimir Kamashev from Izhevsk in the Urals. 'We did X-rays and found what looked exactly like a tumour. I had seen hundreds before, so we decided on surgery.'

Before removing the major part of the man's lung, the surgeon investigated the tissue taken in a biopsy.
'I thought I was hallucinating,' said Dr Kamashev. 'I asked my assistant to have a look: "Come and see this - we've got a fir tree here".
'He nodded in shock. I blinked three times as I was sure I was seeing things.'

They believed the coughing of blood was caused by the tiny pine needles piercing blood capillaries. 'It was very painful. But to be honest I did not feel any foreign object inside me,' said Mr Sidorkin. 'I'm so relieved it's not cancer.'
The report appeared in popular tabloid Komsomolskaya Gazeta, and was picked up by Russian news service Novosti.