. . .FIREBERT: Neurofibromatosis, Facial tumor.

A Chinese man recovers from surgery that removed part of his facial tumours, which weigh more than 20 kilogrammes in total.

The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural (nerve) cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Although many affected persons inherit the disorder, between 30 and 50 percent of new cases arise spontaneously through mutation (change) in an individual's genes. Once this change has taken place, the mutant gene can be passed on to succeeding generations. Scientists have classified the disorders as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of the neurofibromatoses. In diagnosing NF1, a physician looks for changes in skin appearance, tumors, or bone abnormalities, and/or a parent, sibling, or child with NF1. Symptoms of NF1, particularly those on the skin, are often evident at birth or during infancy and almost always by the time a child is about 10 years old. NF2 is less common. NF2 is characterized by bilateral (occurring on both sides of the body) tumors on the eighth cranial nerve. The tumors cause pressure damage to neighboring nerves. To determine whether an individual has NF2, a physician looks for bilateral eighth nerve tumors and similar signs and symptoms in a parent, sibling, or child. Affected individuals may notice hearing loss as early as the teen years. Other early symptoms may include tinnitus (ringing noise in the ear) and poor balance. Headache, facial pain, or facial numbness, caused by pressure from the tumors, may also occur.

Is there any treatment?

Treatments for both NF1 and NF2 are presently aimed at controlling symptoms. Surgery can help some NF1 bone malformations and remove painful or disfiguring tumors; however, there is a chance that the tumors may grow back and in greater numbers. In the rare instances when tumors become malignant (3 to 5 percent of all cases), treatment may include surgery, radiation, or chemotherapy. For NF2, improved diagnostic technologies, such as MRI, can reveal tumors as small as a few millimeters in diameter, thus allowing early treatment. Surgery to remove tumors completely is one option but may result in hearing loss. Other options include partial removal of tumors, radiation, and if the tumors are not progressing rapidly, the conservative approach of watchful waiting. Genetic testing is available for families with documented cases of NF1 and NF2. New (spontaneous) mutations cannot be confirmed genetically. Prenatal diagnosis of familial NF1 or NF2 is also possible utilizing amniocentesis or chorionic villus sampling procedures.

Xu Yanlin,
body disfiguring tumors.

23 year old Chinese man Xu Yanlin lived like a hermit for 8 years because of tumors

23-year-old Xu Yanlin lived like a hermit in China for eight years because of body disfiguring tumors.

Yanlin was taunted for years because of this tongue-shaped tumur on his chest, but he finally has had an operation to have it removed.

The Chinese man was struck down by a condition that left his body covered in disfiguring lumps when he was a child. One of the lumps developed into the tongue-shaped tumor.

Jose Mestre

"CHILDREN see me and start crying,"

Jose Mestre mumbles sadly from behind the monstrous 12lb growth that is eating his face.

"They probably think I'm an animal. Why me, why has this happened to me?"
Jose has one of the most extreme facial tumours ever seen in medical history.
And the 51-year-old, from Portugal, is in danger of being suffocated by it unless he undergoes drastic surgery in 2008.
Unemployed Jose is blind in one eye as a result of the giant weeping growth that has consumed his features.

Jose,

For years he has struggled to eat properly or carry out everyday tasks.
The tumour has taken over his mouth and tongue, ballooning his lips, twisting his gums and breaking his teeth off. The deep, 15cm long growth - which started as a birth mark when he was just 11 - was sparked by abnormalities in his capillaries and veins.
It started to get much bigger when he hit 16 and has been expanding ever since.It also bleeds frequently and most mornings Jose's pillow is covered with blood from the night before.
"My face is ugly but my heart is not," he pleads. "I just want people to understand who I am. I don't like to speak very much because I dribble all the time."
Jose lives in Lisbon and spends most of his days sitting in one of the city's main squares watching the world go by - as well as being gawped at by members of the public and quizzed about his face.

Many take photos on camera phones of the man known locally by the hurtful nickname 'StainedSkin.'
And his looks have also made him an unlikely 'celebrity' in the area.
Jose's condition went overlooked for years as a mixture of misdiagnosis and personal problems saw the years roll by without medical attention.
After his mother died several years ago, Jose's younger sister Guida, who has a 9-year-old daughter of her own, became his primary carer.
She balances life as a hairdresser with looking after him, ordering his food and being on call 24/7.
And Guida wears her heart on her sleeve when it comes to her views on his treatment.

Recently Jose flew to the UK to discuss the possibility of surgery to remove part of the tumour.
But because his mother was a Jehovah's Witness, he refused any surgery because his religion means he can't have blood transfusions.
This made Guida fume and her brother's stubbornness led to her storming out of a surgeon's surgery.

Carer ... sister Guida looks after him

"Die alone, not with me. For me, finished," she yelled as her frustration boiled over and her calls for him to take blood fell on death ears.
But soon after she was feeling much better as it seemed there was finally a light at the end of the tunnel.
Doctors in London came up with a plan to remove parts of the growth bit by bit - without transfusion.
And after days of uncertainty, Jose finally agreed to go under the knife after returning to Portugal to think it over.
He is expected to come back to the UK soon once a date is set for the operation which will transform his face - and his life - forever.
"I feel sad and annoyed," he says. "If it wasn't for the blood inside I would cut it myself.
"I get upset because people come up to me, take a photo and go.
"I want to be able to talk to my friends, speak to everybody and feel my eyes.
"And I would love to travel and see the world."

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Huang Liqian

This man from China finally had a huge tumour removed on 2007, after discovering it 17 years ago.

Huang Liqian, 58, first discovered a bizarre growth on the back of his neck in 1990, but chose to ignore it. However, as the years rolled on, it continued to increase in size at a rapid pace, with the growth ballooning to 15kg. Liqian was taken to the First Affiliated Hospital of Chongging University of Medical Services in southwest China's Chongging, where he had the tumour removed.

~~ ~~
Gao An Ni

Gao An-ni, an 8-year-old girl from the rural countryside in An Yuan county in East China's Jiangxi Province, suffers from a tumor in her underlip. An-ni was born with a tumor in her underlip, and she couldn't receive timely treatment for the poverty. On 2007, her father took her to see doctors at the Hospital affiliated with Gannan Medical College. But when doctors there told him that the operation to cure the tumor and the following cosmetic surgery might cost a lot for the family, the father decided to bring back his daughter to their hometown.

Phuong

Phuong is a 27-year old with the largest facial tumor I have seen. The tumor began to grow at age 7, and quickly took over his entire left face, enveloping his eye and ear, and clearly keeping him from living a normal life. He has had three surgeries before, but the tumor has grown back each time. Recently, no local doctors or international team visiting the area has offered to take his case, due to the risk involved with the blood loss and the need for careful post-op care. Even in the US, this case would be considered a difficult case and booked for a full day in the OR.

Chen Zongtao:

154 pound (70kg) tumor on his right leg

Chen Zongtao, 29, lives in a remote Chinese village and hasn't been able to afford medical help. The growth first started on his left foot when he was two years old. But it soon spread across to his right leg and engulfed it. Over the years, it has ballooned in size to weigh more than 70KG or 154 pounds. Doctors at the hospital in Changsha, central China's Hunan province, have been probing the tumor. Zongtao is said to be suffering from neurofibroma - a usually-benign tumour originating in nerves. It is not yet clear if medical teams plan to take action on the growth.

Lai Thi Doe

The 15-year old Vietnamese girl Lai Thi Doe developed a gigantic 7-kg tumor in her face which can block her throat. The Schwannoma tumour is not highly uncommon however the size of Lai's tumor is possibly the largest ever reported.The rapid growth of the tumor may eventually impair her ability to breath. Her plight in Vietnam caught the International Kids Fund (IKF) which launched a fund-raising campaign to cover the $170,000 expected costs of the operation at the University of Miami-Jackson Memorial Medical Center. The operation lasted 10 hours.

Son Pham

A Vietnamese orphan in Halifax with a benign, disfiguring facial tumour is preparing for a surgery at Children's Hospital Boston to reduce the size of the growth.
Son Pham, 11, will have a lip reduction surgery. Doctors will target a football-sized tumour that has built up in front of his lips so it protrudes less, said Olwyn Walter, who's been caring for the boy over the past year in Halifax.
"He knows that this is the first time that he'll see a significant difference," Walter said in an interview with CBC News.
"He's used to coming back from Boston actually looking worse than he went because the schlerotherapy treatments cause extensive swelling. In this case, he is going to come back looking different, and hopefully somewhat better, given that the removal of his malformation will have begun."

In January, Son had a tracheostomy, in which an incision is made in the trachea and a tube is inserted to keep the airway open throughout his treatment.

More surgeries ahead

Surgeons will not yet touch the largest part of the growth in Son's cheek area. They plan to do so,

The U.S. team disagreed, deeming his condition life-threatening because they feared the growth could block the boy's windpipe and prevent him from eating properly.

Chantal Sebire

Before she got sick, and later having the tumor

The tumour burrowed through her sinuses and nasal cavities, causing her nose to swell to several times its original size, and pushing one of her eye sockets out of her head.
Sebire, a former schoolteacher, was diagnosed nearly eight years ago with esthesioneuro blastoma, a rare form of cancer.
The illness had left her blind, and with no sense of smell or taste, her lawyer said.
She could not use morphine to ease the intense eye pain because of the side effects.
Sebire's body was found at her home in the eastern town of Plombieres-les-Dijon in the Bourgogne region .
The cause of her death was not immediately known, Dijon prosecutor Jean-Pierre Allachi said.
A court in the city of Dijon rejected Sebire's request to be allowed to receive a lethal dose of barbiturates under a doctor's supervision.
It refused the request for doctor-assisted suicide because of French law and out of concern for medical ethics.
Sebire had told the court she did not want to endure further pain and subject herself to an irreversible worsening of her condition.
Sebire's case caught France's attention when the media published heartbreaking before-and-after pictures that made her suffering instantly apparent.

Lakhmani Devi

Doctors removed the massive parotid tumor from the side of Lakhmani Devi's face, which weighed more than 4 pounds,